Friday, August 08, 2008

Riley update.....

After lots of playing in the office mirrors, lots of funny songs, books and peekaboo, we survived our two days, and 6 appointments at Riley.
we were a little scared on thursday that everyone was going to be disappointed with his weight gain, but fortunately he didn't grown in height which gave him some catch up in weight and everyone was actually for the first time ok with his weight to height ratio. that was a pleasant first. We however had to do some extra blood work to check into why he wasn't growing in length the way he should be. this could be due to alot of different reasons. Blood work will tell next week. they drew 6 viles of blood so we will have lots of results, from Renal and Endocrinology. We talked with his kidney doc about the possibility of growth hormone shots (not because I want to give him a shot a day, but because it might help him). She was tentative due to the side effects being slowing of his thyroid and hip problems, both which we already have issues with. So she is going to research it and discuss it with his other doctors.

in regards to feeding and nutrition we got some answers to some questions and some new foods to try orally...including puffy cheetos, who would have ever guessed that would be on my babies new one year old diet. Will see if he likes those. I know his papa vince and his mama like cheetos. we will see if it runs in his genes. :) over all she was happy with his gain and there were no changes to his formula or diet.

then we saw Urology. they are testing his bladder fuction, watching the renal reflux, and the mechanics of his single kidney. So we had a half hour of tests and then we met with the doc. we were hoping to see a change in the bladder function, spasms and reflux, due to the untethering of his spinal cord, however the results showed little to no improvement. what does this mean you ask? well, a few months back we got put on on detrol, that was to control bladder spasms, but it caused the severe constipation and enemas he got back in January and we stopped the medicine in hopes that the surgery on his spine would help. We now have to go back on the medicine, most likely if it works for a lifetime or he could grow out of the "overactive bladder". the other options are pretty severe so we are praying that we can make the medicine work. the overactive part in conjunction with his renal reflux puts a greater risk on his kidney. not only daily with the idea that your pee in waste/toxins from the body, but especially if there is a urinary or bladder infection of any kind or of any size.

So all in all we had 1 bad news appointment out of 5. I think that is a good trip all in all. it is one more medicine to ingest and another challenge to get his stools regulated once we add this new medicine. but like all the other challenge we take this one on head on with the help of God. We are starting to journal his intakes and outtakes again to help with reporting to the doctors. WE have learned in the last year that sometimes a little more work everyday pays off in the end. We also got to see my cousin and her baby Brice while we were there...aren't they both soo cute.

thank you in advance for all of the prayers for these appointments and over then last year. Can you believe it has been a year? WOW. what a journey we have all taken. You all have been such a support and encouragement so far. I can't wait to share what God has in store for our family over the next year to come.

Happy Birthday Little Jackson, two days Early.


Laura said...

I can't believe it's been a year! Wow...Happy Birthday sweet boy!!

Heather said...

Sounds like you had a great day. 4 good appointments out of 5 is wonderful.

He is just a doll, I want to pick him up and squeeze his cheeks!

Happy Birthday, Jackson!!!

Shannon said...

Could he seriously be any cuter? It's unread :)