Medical Update

Monday we had Daniel's fluoroscopy tests to recheck his bladder and kidney and to see if there was anymore reflux. This was a sedated test and I have to admit that Daniel was quite hilarious under the sedation. He never fell completely asleep, but I don't think he remembers a thing, which I am glad.

At one point during the test, he's laying on the table and I'm on one side and a nurse is one the other side of his head and he looks over at her and says all slurred and in slow motion "Are you my grandma?" She says "no, but I do need you to go ahead and go pee-pee now". And no joke he says to her "Then I'm not talking to you." And he slowly looks over to me and says "Mama, you are Elmo and I'm the Cookie Monster." How we went from one to the other is beyond me, but I was glad for the comic relief!

So the results from the test were that there was still a slight amount of reflux, but because Daniel's bladder is so large and it takes so long to fill, the techs tend to overfill and it forces reflux. In essence, they consider it a slight amount of reflux, but they can't be 100% sure, so as it stands right now, no further surgery is required.

His kidney is still functioning well and in the doctor's word he can "See the improvement". This was big for us, because normally they say it may be slightly better, but they can't tell, etc.etc. So for him to actually say that he can see the difference made me really happy!

Finally, we do have further tests in 6-9 months to study Daniel's bladder more. Each time I post that Daniel has stopped having accidents, he starts again. More so it's really just a leakage problem due to the size of his bladder and the fact that we can' tell how much feeling Daniel has when his bladder is full. Couple that with the age factor and that children prioritize differently than adults (as in toys over potty) we have kind of a mixed bag of issues.

I hit the doctor pretty hard this time with questions pertaining to long term and school, so they agreed that the further tests will give us new readings to look at and we can talk then about further care. We really want Daniel to be able to achieve total continence, so we'll do whatever they suggest.

For now we've purchased a Wobl Watch which is a medical watch that vibrates to remind him to go potty to give me a permanent break from constantly watching the clock and reminding him to go potty. This has been a struggle at times, as he started to eventually defy me with not going to the potty and then I had to start time outs for not listening, refusing to go etc. and was making myself and Daniel, I'm sure, miserable.

Since he's starting summer camp with children his own age and older, we thought the vibrating watch would be discreet enough and it looks like a regular old watch. The instructors are aware and know that if he runs for the potty in the middle of an activity to just let him go and encouraeg him, not stop him.

We're hoping being around older children may push him to try a little harder also. We've noticed when he's out in public he tends to not leak, whereas at home, where he is most comfortable, he lets go (no pun intended).

We had really hoped we would be at the end of this by now, but we'll just take it as it comes and be thankful that it's not something life threatening or more serious.

Please continue to pray for healing for the bladder and left kidney.