Good news!

Rose Nacheca had her appointment with the Infectious Disease doctor today. I have been dreading this appointment for the last 10 days since we heard her test results. I had feared the worst and it turned out I worried for nothing.

Rose Nacheca has indeed had CMV at some point. This doctor though seems to have serious doubts that it was during the first trimester of her mothers pregnancy with her. She does have some characteristics of congenital CMV but she is NOT severely affected. Things could have been so much worse. At this point the biggest concern is her hearing. They set us up with an appointment with an audiologist in November to see how well she hears. They ordered some other blood tests to check how some organs are functioning but overall he is VERY happy with how she looks :) He really thinks she will do just fine!!!!

So I guess we go back to the endocrinologist to pursue the low IGF-1 and IGFBP-3 levels. The next step for her is a MRI. Not too sure when that will happen yet. Hopefully soon!

Thanks for the prayers!!! She has been sick since Friday. She has had a cold, fever and stuffy runny nose, and now she has an ear infection again. So hopefully with the new antibiotic she will start feeling better (and sleeping better LOL) really soon!!!

It has been a long time since I have updated this. We have been very busy with the kids going back to school.

We have some more news on what is going on with Rose Nacheca. Our endocrinologist went out of the country the week after Rose Nacheca's initial appointment. All the results from her blood tests were unavailable until he returned a week and a half ago. He called last Thursday to let me know we had some answers.

There are certain infections or viruses that can cause serious birth defects when a mother gets them during the first trimester of pregnancy (like measles). Rose Nacheca's mother had one of these infections during her first trimester of pregnancy which is what is causing her failure to thrive. She tested positive for the antibodies which means she is now immune. However her small head, severe growth retardation and heart defect all orginated from this infection mom had. She goes to a specialist on the 27th to see what other organs might be impacted as well. One of the complications that frequently happen with this is hearing and vision loss. It is a degenerative thing so this could happen at any time in her future. This news made me very sad. She is thriving so well, learning to talk and speak English so well. To know that there is a chance (we don't know yet how likely) that she will lose her hearing was very devastating!

She is also deficient in the same hormones that Michelle is deficient in. There could be a couple of different causes of this but they all originate from the birth defects she was born with. These hormones are primarily produced in the liver and the liver can be affected by her condition so this could be causing her liver to not be functioning properly. She has had liver panels done and they were normal so that is a good sign. The other possibility is that her microcephaly (small head) is affecting her pituitary gland and causing her to be growth hormone deficient which would also make her IGF-1 levels be low. More tests have to be done at the endocrinologist to determine for sure what the source of her low IGF-1 and IGFBP-3 levels are.

So we were very surprised by this news. She is such a happy little girl. She can speak full sentences and understand almost everything that you say to her! She says please when she wants something and thank you when you give it to her. She keeps up very well with the older kids in the house. We read lots of stories and she would color for hours at a time. I will be honest when I say I was a little angry inside at her diagnosis. An infection that would be so inconsequential at any other time except the first trimester of pregnancy has left her with a congenital birth defect. That is really crappy timing! I know that God has a plan and purpose for everything. I trust in his timing and his plan. I also have gotten to know this little person very well and I do not see her being the type of person to let any of this stop her! Many of the children born with this congenital birth defect never walk or talk. They are unable to hold their own head up and have to have feeding tubes put in to keep them adequately nourished. I think about that and I have to wonder......this little girl lived the first two years of her life in a type of poverty most of the world could never imagine! She slept in a straw hut in the middle of the jungle. She had no medical intervention at all! And yet here she is at three years old and she is walking (most of the time she is running and jumping and dancing!!!) and she is speaking full sentences. There has to be a plan for her life. I am convinced of that.

So we will see what the doctors have to say next week. Please pray for her and for the doctors to have wisdom. At first I was very discouraged and sad but I really believe that she is one tough little lady and with our prayers reaching her perfect creator she is in good hands!

I will update a little about Michelle later. Goodnight!