6 months ago we had an ultrasound done on Lili's kidneys after the melamine poisoning scandal broke in China. The radiologist found one stone in her right and two in her left. On Wednesday I went to Boise with the little girls and Lora and Mady to have Lili's kidneys rechecked. She had an actual pediatric Radiologist do the ultrasound and not a tech. He told me "no stones". We were thrilled and in unbelief. I considered doing a no-show to her next appointment at the ped. nephrologist who flies in a couple times per month from Portland... Lora convinced me it would be "rude" :)
Anyway, he came in and said I have good news and bad news... (heart dropped)... good news - "her stones are gone" bad news is her kidney on the right side is shrinking and is smaller than than it was 6 months ago and the left has not grown. This means they are not functioning correctly. The one on her right is off the chart small (I did not know they have growth charts for kidneys like they do for height and weight and head) and her left kidney is on the bottom of the chart... but they were normal last visit so they have not grown like they should. After he stated all of this I felt like I needed to put my glasses on and shed a few tears but I was grown up and did not :) would love it if somewhere there was a mismeaurement... The doc was very kind and very concerned. He said that he assumes that the melamine is the cause of this and that the stones have passed. Last visit he was not too concerned and stated that the medical community just does not know what to do or expect... these were his same words this time... He said that he wants to see her in 6 months to redo blood work (her first set of blood work was off a bit and he said this would indicate the damage being done to the kidneys), urine, ultrasound and visit and HOPEFULLY they will have begun to grow again.... I had to ask the dreaded "if not" question and he said, "then she will be in serious trouble in about 5 years (ie... kidney transplant)"...gulp. So, we'd appreciate your prayers for her. The doc is going to go back to Portland and compare files with all of the other kids from China and research and try to learn all he can for us... problem is, I think Lili may have been one of, if not the first in the country to be tested for this... those who follow are not far behind but we are all still the guinea pigs of the melamine scandal. I asked the doctor his opinion again on whether or not he thought these cases were similar to another child from China (she is 6 or so years older than Lili and a daughter of a friend of mine growing up)... last visit he said no and this visit he told me that he is going to compare files... she began having kidney problems before the melamine scandal broke and docs had no answers to the cause until possibly now. Anyway, in my mind this could be a disgusting problem for all of these sweet, innocent children still in China and adopted. A real visual in greed.
Our pediatrician was sweet and called yesterday... she said, "hi Melanie this is Jane" in her cute South African accent... she is such a great lady and I appreciate her help without appt and her friendship. She told me if I want I can run urine samples and bd work whenever I feel I need to - this way I can check for myself if she has an infection (which would indicate more damage) and bd work would show more thorough functioning (she said urine is very inexpensive). I had both tests done yesterday. Urine came back good and we will hear this morning on bd work. I will probably check urine frequently and not bd work (bd work is more $ but I just want to stay on top of the urinalysis in case of infections- it is hard to know with both younger girls when their bodies aren't right... they learned during first year or two of life that crying does not work ... for example Meili burnt her hand pretty bad on the curling iron but did not let me know and definitely did not say anything about the blisters on her finger tips) I so appreciate Dr. Scott and her willingness to help Lili on a phone calls notice. She really cares for her. Portland doc said we'd wait 6 months to run them but dr. Scott knows me well enough that I need to be doing something during the 6 months...
I apologize if you are family and this is the first you are hearing of this mess. I think Scott and I are both in denial and don't want to think of it...easier to type and forget. Hopefully, she will be okay and hopefully this was just a fluke... in 6 months we will know more.... that is the hard part - wait and see.... but you know me - I will keep on top of it!
Good news again. While in Boise we stopped at USCIS (Homeland Security) to make sure all of Lili's paperwork was moving along. I was told she will become a citizen of the US on March 18th. I think we will go stay the night and hangout with the kids (this is during spring break-Scott's idea... i was shocked and happy that he will get away for the night-such a great dad!)
We also made stops at Kid to Kid and found some cute clothes, ate some YUMMY food at the Cheesecake Factory prior to appointment, and picked up the yummiest peanut butter, chocolate, caramel apple on the way home from Rocky Mountain Chocolate...mmm... the girls slept and we had fun visiting.
Again, please keep her in your prayers... I felt them in China and they were amazing!
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I am so glad you asked me to go to this appointment with you. We had a very fun day! Except for one huge punch in the gut :(
ReplyDeleteWe are in this together, no matter what. We will fight for our precious gifts from God and China.
So call anytime to vent or cry or if you just need a hug. I know you would do the same for me. I don't know what I would do without you, my friend who completely understands....
Lili and Mady are at the top of my prayer list :)
My heart goes out to poor Lili. You as well. My thoughts and prayers are with you. She is such a beautiful little girl. Keep us posted!
ReplyDeleteOh, bless sweet little Lili. Very scary. But, I know somehow everything will turn out in the end because of the types of parents you guys are. Love you guys so much. Love her too. We will be praying for her.-Leslie
ReplyDeleteWow. Yes she is certainly in our prayers. What a great dr to call you. I agree it would be better to stay on top of it all, rather than wait 6 months to get any info.
ReplyDeleteMelanie, I am sorry to hear of this set back. We will keep you all in our prayers!
ReplyDeleteWe will definitely remember Lili in our prayers.
ReplyDeleteMelanie - I'm always thinking of you and praying for your beautiful kids. Love you! Tracie
ReplyDeleteOur prayers are with Lili & your sweet family.
ReplyDelete