I just got a call from our Dr. the kids blood work is great. Everything is functioning at “normal,” and there has been no change. So the kids are stable, stable, stable. Bentley’s platelets are still low, but higher than 6 months ago, so that is stable. Their kidney function and thyroid function were good. YAY!

The kids were into their crepe date!

xo, nikki :)


Nephrology Update

Last Wednesday, the kids had their Nephrology appointment. It went well, nothing to report. The Dr. thought that the kids were looking good and ordered blood work. I had waited to do the Endocrinology blood work because I knew that the Nephrologist was going to order some too. I made the appointment for the blood work and prayed we would make it on time. We almost didn’t because there was an intern with the Dr. and it always takes twice as long. We are a special case and the Dr. likes all the interns to learn about us. Anyway, we made the blood work appointment without a minute to spare. The kids did really well even though I put the “numbing cream” on a couple minutes before we walked through the door! Bentley didn’t cry at all! We haven’t gotten the results back yet, but I will update the blog when I do! We went to Chick-fil-a to celebrate getting through the blood work! We were going to go to the zoo too but I had a couple errands to run. On Friday we went to the zoo and it was a beautiful day!!

I don’t know if many of you experience going to the doctor’s very much, but a very surreal thing happened at the past three appointments. Pretty much all the staff remember us and called us by our names as we walked through the door. I knew this day was bound to happen since we see most of these people every three months. But I guess the surreal part was that they were excited to see us and noticed how the kids had changed. One of the nurses that has been with us from the beginning, rejoiced with me because Marseille gave a urine sample, which Marseille hasn’t been able to do for the past two years! It’s interesting to see how these people become friends because they are helping us through our journey. Just some random thoughts :)

Here are some pictures from the zoo. We only saw about a quarter of the zoo because the kids had to go to the bathroom and I promised them they could play on the playground!

The lemur plopped down to enjoy the sun!
The Elephants :)
The park and the zoo go hand in hand!
Spring is here!
The kids were sad that the goats were enjoying the sun and not coming up to them!
Mom take our picture here!

xo, nikki :)

Endocrinology Update

Last week, we had our first appointment of the year! The kids have been very stable so I went with no expectations. They each gained a pound since their last visit, which was late October. They will be getting blood work done next week to check their thyroids, plus whatever labs the Nephrologist orders. Both kids have fallen off the growth chart again.  Since there has been no real progression in renal failure aiding the ability to do growth hormones, the Dr. thinks maybe it’s time to increase the dosage of their thyroid meds. The blood work will tell us if that is a viable option. The Dr.’s concern isn’t just that they are small but in time if they are not growing their brains can also not develop, and we obviously don’t want that. There is no apparent lack of brain development, as the Dr. kindly pointed out as the kids were chatting away, but it can happen over time. Otherwise, it was a good appointment. We don’t need to be seen again until the summer.

Next week, we have a Nephrology appointment, so we will see how that goes. I’m not really expecting too much since we haven’t had any new blood work done. Marseille should be up for an ultrasound. I am hoping that since Bentley just had one late last year, they won’t need another one, but that may be wishful thinking!

Enjoying their school lunches for date night :)
Enjoying their school lunches for date night :)

xo, nikki :)