Friday, April 28, 2006


Sorry, I totally forgot to post about Max's doctor appointment! Got so excited this morning with his poopy (he just had another by the way...yippee!) and then I got a lot of emails from everyone saying "HELLO??? You haven't updated us about yesterday. How is our lil' guy doing???" Thanks for your appreciated! :)

The appointment was very long...with many tests and xrays. They did a urine culture, and for the men out there, you know how unpleasant that is! They had to try multiple times and Max was NOT happy, not at all. Results will be back today or tomorrow.

The doc also wanted xrays of his abdomen to research any possible blockage issues. FORTUNATELY, nothing was structurally wrong...just A LOT, A LOT, A LOT of gas. Yikes! And what do you think happened AGAIN with the xray technicians? Yep, different people, same story.

"You can sit him here."

"Nope, sorry, before we get started let me explain, Max absolutely cannot sit by himself. He has a very weak torso due to CHARGE, his genetic disorder. These kiddos have little upper body muscle tone."

"Ok, then I will sit him in this device here...that should work."

"Nope, again sir, sorry but that will not work...he CAN NOT sit up. He can barely hold his head up for just a few seconds."

And then with a very inquistive look, "How old is he?"

"He is 10 months old...yes I can tell you are confused. As I mentioned before he has a genetic disorder and spent a long time in the hospital and he is very delayed."

FINALLY...after much more back and forth, I showed them how we always do the xrays and they followed my lead. At least this time I was prepared better...but it still is not fun having to walk people through all of Max's issues.

Then because Max was feeling so bad and lethargic, he just lay there and it was soooo sad. They kept saying what a good boy he was, but I was thinking about how sad it was that he was getting so used to being handled and tested that this didn't even bother him. It broke my had to be there, but it was definitely a very emotional xray experience.

Let me say though that the technicians were very, very kind...they didn't mean to hurt my feelings or be frustrating. They just couldn't understand why Max couldn't sit up...apparently they must not deal with many special needs children. But hopefully they now have a better grasp of the challenges after our discussion.

ANYWAY, his fever continued throughout yesterday and a little into the night but this morning it was down...not down to normal, but not considered a "fever" anymore. I *think* Max may be on the road to recovery. Perhaps, just perhaps, I can hope for sleep tonight...maybe three or four uninterrupted hours? It's amazing how mommy loves get you through though, isn't it??? :)

It is an absolutely beautiful day here in Bellingham and I think I may take Maxwell outside for some sunshine. Always makes me feel better...hopefully it will do the trick with him too!


praying for you said...

Thank you Amy for letting us know how sweet little Max is doing. I am sorry that people are not more considerate of your feelings. That must be very difficult. Thank goodness, you are loving and patient with these people so hopefully next time they will be quicker to understand that all of us are unique! I have to tell you that my two children ask me every day to check Max's web page to see how he is doing. They especially love when you post photos of him! He is adorable and delicious and blessed to have you for his mommy. Have a fabulous weekend!

Anonymous said...

I suggest this. Put a laminated pin on max that says I'm a charger and I CAN do the following.. and list it.

then say If it AIN'T on the list DON'T ask...

Sara B said...

Hey Lady-
Wanna have a sleepover tomorrow night? I'm at the store in the morning, but call me...I'd love to hang out with Max, so you can sleep.

elle said...

thats great you took wat i said LOL my hosptial got so used to people like me well its one of the main teaching ones in sydney aus and well they get lots of people like max and people even that cant even move at all but then there was allwyas the thing with a new one coming coz i cant stand for long for the chest ones and the new ones would go stand here but i cant stand that long but the old ones would let me stay in my chair we jsut need t teach them hugs like anges idea bout charger LOL xxxxx

Ruthie said...

Awesome job on handling the tech! I love Ang's idea though. And what a conversation starter that would be! Might just make your life easier. And plus it would something else for him to chew on! Hope he is over his sickness.
Take care-