Monday, July 5, 2010

Happy 4th of July Weekend!

The boys had a fun weekend with the warm sunny weather. I think we've used almost an entire bottle of sunblock in 3 days! Not much has changed with the boys, other than Brady saying "HI" pretty well while waving at people. We're also conducting a little experiment of our own on Jax. 
Jax was not responding to the new drug, which was a little surprising since it's only job was to make his food pump thru his stomach faster (in theory it makes total sense to work). But so far I've learned from Jax that if I would just sit and really think about what is new or what is different in terms of whatever his current symptoms are, I can usually look back in hindsight and say, "oh yeah! I wish I would've thought of that sooner!"

So I thought long about it. Jax doesn't get sick at night while sleeping, and mainly is sick half way through his morning feed. Almost like clockwork on a daily basis. Half of the days, he gets sick at the end of his afternoon feed as well. So what does he get in the morning and afternoon, but not at night. Well that would be MOST of his supplements. He only gets a few at night compared to the large load earlier in the day.

So after a particularly rough day on Friday (he got violently sick morning and afternoon) I decided to hold off on his morning supplements on Saturday, just to see. Now we haven't EVER skipped a supplement round in a year, not even while he was in the hospital (the doctor's gave me the okay to give them myself). I just wonder if his body doesn't want or need them anymore (kinda like when his body was done needing the laxative).
Well... he didn't puke. So we skipped his afternoon and evening supplements yesterday as well. No puke. Was this a coincidence? We assume so... but we have to find out. So we skipped them this morning and afternoon and so far nothing again today. We had him in the car and outside in the heat (he actually was on the pump for an hour while outside for the parade this morning - very impressive!). So here we are... going on a day and half without any vomiting or supplements. 

We hate playing around with his system and making these kind of decisions, but we're at a place of no choice anymore. We plan to get his system levels checked with some upcoming blood work, but that takes weeks to come back and conference about. We're trying to move forward with the feeding clinic coming up as well, so all this vomiting would not help any of that. Not to mention a little piece of me just dies for Jax watching him go through these violent vomiting episodes. I just don't know what to do anymore and feel like we're grasping at anything to make this all go away. 
So we'll see what happens...
Here are a lot of pics from the weekend:

The boys climbing up a slide at a park on Friday night.
Our little Angel Jaxie.
(He had a rough day of being sick and was so happy to be at the park later.)
Our best attempt at a picture of the 3 guys...
That competition doesn't look very fair!
How we found Brady Saturday mornig... completely stuck in his crib.
At the beach lake near our house.
(Brady stood in that spot forever until we made him move!)
Jax only liked walking in the shallow water. Sitting or crawling in it was a bit of sensory overload for him, so a few more times there and I bet he loves it.
Then Brady decided to crawl around in the water. He kinda sat there and starred at the water for awhile - he's so funny.
2 busy monkeys on the beach.
Checkin' out the ladies at the playground on the beach.
They took over the neighbor's toy again!
Classic image of Jax strollin' around with his lion in the yard!
Brady got a ride from our neighbor, 4-yr old Matt!
The boys enjoying the parade this morning. 
They were actually VERY well behaved - who knew! We parked them behind the crowd under a little tree and they enjoyed waving and clapping the whole time.


Anonymous said...

I love all the pictures! The one of Brady stuck in his crib is great, especially with the big smile on his face! :)

I hope you get some answers with Jax, as always!

Melissa said...

Thanks for the info on the park! Is that the park you were at in the pictures? If so, it really does look nice....we will definitly have to check it out!!