Sunday, December 20, 2009

Bad blogger!

My apologies for being a bad blogger. Time has just gotten away from me. I even let our big anniversary go by without a post! We're past the 1 year mark, can you believe it!!!

Back in November we saw the new peds nephrologist at UMMS, Dr. J. She is lovely and we really appreciate some of the different perspectives on peds renal care that she is bringing to the table. At the time when we saw her Katie was showing as having a large amount of bacteria in her urine, however, Dr. J has seen this in her bladder compromised renal transplant patients and said that at some point we'll probably have to stop treating them and consider it to be a colonization rather than an infection. This is one of the things I had been saying since we had gotten to that same point with urology before we got to the point of transplant. Dr. J and I discussed it and Katie's nonexistent symptoms of infection and decided there was no time like the present and we're not treating these over growths of bacteria unless she becomes symptomatic. Two other big changes took place in November as a result of labs as well. Katie's white blood cell count is too low (another clue we have that this over growth of bacteria isn't an infection) and this is likely due to some of her medication. So she was taken off of one of the meds for the EBV mismatch. Also we discontinued her prophylactic antibiotic since that seems useless. Finally, we reduced one of her anti-rejection meds (Cellcept). The other change was that we are now only doing labs once a month, that's a huge plus for Katie.

This month's round of labs has brought more changes. Her renal function is still steady as a rock so that's good news. However, her white blood cell count is still too low. We have reduced the Cellcept even more starting this week and have had to go up on her other anti-rejection med (Prograf) because that level was a little low, not too terribly just a little. She still has that over growth of bacteria in her urine but still shows no signs of infection. They do want to repeat her labs in 2 weeks but we'll be off for winter break so it will be a little easier to get that done. The stinky part is that in order to get a Prograf level we have to get up and to the lab early in the morning.

With the med changes over the past two months her med list is now down to 1/2 page! I can't remember the last time it was this short. It's almost memorizable again.

School has also seen some big changes for Katie as well. She seems to be making more and more friends everywhere she goes these days. She had her tri-annual IEP testing in the last few months and has been released from her IEP. We will move her accommodations over to what's called a 504 plan so she will still have things like her water bottle needs to be with her and extended time for assignments and such but this change paves the way for us to move her out of her current classes. Since she began with her IEP she has had to be in classes where there is additional adult support. These classes have tended to have more behavior issues as well as the additional learning issues and the behavior issues have been very distracting for Katie. We're hoping that soon after the new year she can move into a different team of teachers and transition into classes where the learning is more important to the students than in some of her classes now.

Thanks for your continued support and prayers!

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