Dear friends and family,
Thank you so much for your support and prayers through this intense time in our lives. I have a few udpates for you today.
First, I want to rejoice in the fact that the Crawley family and the Portilla family (both families are friends of ours) have passed court this week and will travel to ET in 2 weeks! I am thrilled! We met both of their girls when we were in ET and both are so very precious!
Second, my surgery went well yesterday. Thank you for praying. I had a lumpectomy and the surgeon ended up removing both cysts. He had to cut more out and go further into my chest than he was expecting so I am a bit more sore than I expected. But I'm really doing just fine. It's all a bit swollen - even under my arm going around my rib cage - but that's it. I just have to be careful with lifting for the next couple of days. The doctor does not think either cyst is cancerous, but they are being tested anyway and I should hear more about that in the next 3-4 business days.
Third - Gracie... earlier this week we found out that he original basic labs showed elevated liver levels which indicated that she possibly has a metabolic disorder called "homocystinuria". So we were directed to go to the hospital immediately for a second round of labs. We did that immediately on Monday afternoon. At the same time, Gracie's skin had tested positive for TB so the doctor ordered a chest xray. Getting Gracie's blood drawn was awful. Her veins are so tiny and her skin is so loose that everytime they stuck her her vein would role. She screamed and cried. And then her blood kept clotting - way faster than it should. It was a long afternoon.
Since then her chest xray came back negative. So my doctor called and asked if Gracie had a BCG (TB vaccination) because if she did that would explain the positive testing on her skin. Well, on her vaccination record from ET it was not listed... so he ordered us to go back to the hospital this morning for more testing. In the mean time I sent an email to the nurse in ET to see if she knew if Gracie had the vaccination and our pediatrician somehow emailed Gracie's orphange in ET and asked the same question. We were at the hospital at 7:30 AM. I can not explain how awful it was that they had to draw blood from Gracie again. The only good spots were already bruised from testing on Monday. They tried 4-5 different places - even putting flashlights under her skin in her hands and arms searching for veins to poke - and it took 4 different nurses to finally draw blood and put in an iv this morning. I think the tortured lasted over 2 hours. My mother-in-law was there with me and we were both in tears for Gracie. Gracie was screaming and crying so hard... it was awful!
Finally we got the CT scan after that. Then as we were waiting for the results our pediatrician called saying that the orphanage in ET emailed him back saying that Gracie definitely had the TB vaccination - so now there was no need for further testing. AFTER ALL OF THAT! Oh my!
Well, we are glad we got the blood work done anyway - because the T test today will give us no doubt of the fact that she has NO TB! and put an end to that concern. Also the tests today showed again that her liver levels are a bit high.
Now... we wait until Monday to hear about the other labs concerning her possible metabolic disorder. We have been encouraged that if she does have this and we correct her formula and her diet in the future - that she will not suffer the other things associated with the disorder. So, we are waiting patiently for news on Monday. Hopefully there will be some answers as to why her liver levels are high AND why her blood is clotting so badly/quickly.
Thank you for your prayers. As you can imagine we have been so busy with all these doctor and hospital appointments. We have definitely met our deductible this year! YAY~
We are well. Billy's parents are in town so we have plenty of help and we are staying busy as we wait on news.
Blessings and Thanks again for all your prayers!
We'll keep you posted,