Wednesday, July 15, 2009

Quick Update!

Gracie's labs on Thursday went smoothly as the nurse was able to just prick her heal to get the blood. Everything looks the same - which our pediatrician and one other doctor agree is good. They do not think anything points to liver disease, but rather just that she has had recent infections. So - we will retest the liver functions in about 2-3 weeks and go from there. So - that's very good news for now.


And lastly - we are at a camp in South TX. Gracie has come down with another ear infection, low fever, cough and is spitting up a lot - which made for a long night for all of us since we are all sleeping in the same room. Your prayers are appreciated.

We have limited internet and cell phone access so I apologize for any emails/phone calls that I have not been able to reply to.

Blessings,
Cindy

Monday, July 6, 2009

Partial Answers - But REJOICING nonetheless!

I have been so calm and at peace through all the trials the last 3 weeks have thrown our way. But today I was full of anxiety. I was waiting for the genetics doctor to call and tell me what Gracie's second round of labs revealed.... and he didn't call until almost 3pm!!! I just sat around the house ALL DAY waiting, waiting, waiting... I just wanted some answers and all I had was silence for hours!


After speaking with the genetics doctor I wasn't completely sure if the news was good or bad or what. So I called our pediatrician and his nurse was able to explain things to me better. Then Dr. Fitch, the pediatrician, called this evening and now I think I understand... here's the update:

Gracie's original labs showed that a particular enzyme was high in her liver levels. That is what indicated "possible homocystinuria". The second round of labs was for 2 purposes - the blood work was to show if the first labs were reading true. And the urine analysis would reveal if there was any homocystine in her urine. There has to be homocystine in the urine for her to have "homocystinuria" and.............

 THERE IS NONE!!!! So - we can rule out homocystinuria AND the other metobolic disorders at this time!!!!!!!!!! YES! Thank you Jesus! Your favor is on us with or without this amazing news because you saved us and love us lavishly though we deserve none of that - but this news is icing on the cake! We are so thrilled that Gracie will not have to struggle with a life long metabolic disorder. Thank you for hearing our cries! Thank you for clarity on this issue.

So... next round.... we still have to determine why Gracie's liver levels of this one enzyme are elevated. Here are the possibilities... it could be because of the fact that she had chicken pox recently. It could be because of some other infection yet to be determined. OR she could have a liver disease. So on Thursday afternoon we go into the hospital for more blood work (pray for Gracie because that is a very difficult thing to do with her tiny veins and loose skin - it takes hours to get the needle in and get the blood needed for testing). And the doctors will do a liver ultrasound to see if her liver looks normal or not. The 2 blood tests will reveal if there is any inflamation in her liver and will give us a look at her liver functions. And the good news is we should know the results on Friday.

Thursday's tests will most likely reveal if there is a liver disease or not. But if the liver levels are high from chicken pox or other infections I'm not sure that we will know anything for sure for several weeks when we can retest her blood after giving her body some time to heal. 

Either way - we are making progress in figuring this all out. When I think back to Gracie's medical history, she has had multiple infections - one that turned into sepsis - and then chicken pox and most recently a double ear infection... SO... I am really thinking/hoping that her little body has just not had enough time to completely heal and her liver levels will balance out in time. 

Also - Dr. Fitch consulted with a couple of other international internal disease specialists regarding Gracie's TB tests and shared with me this evening that they all agree that no medication should be given because she is showing no symptoms and only her skin test was positive  - three other tests were negative. They all agree that Gracie should be retested with the skin test and the t-spot blood test in 3-6 months to see if there are any changes, but until then we are not concerned about TB at all. As far as we can tell she does NOT have it and that's the end of it for now. WHEW!

My biopsy results are not known yet. I have had almost no worries about that at all. Most of my concern has been for Gracie and Gracie alone. I will probably hear something tomorrow or Wednesday. As soon as I know I will fill you in. But know that I am doing just fine and have no anxiety or real concern about it at all.

So there it is for now. We will keep you posted. Thank you Thank you Thank you for praying so hard! I am humbled by all your support and prayers!

Sincerely,
Cindy

Saturday, July 4, 2009

Grammy and Papa Boots Visit!


I love those sweet lips! Gracie's chicken pox are starting to clear up. I've been putting pure vitamin E on those little scars and I keep praying they will all go away. But either way - she is just so cute!



On Wednesday evening Billy's parents -Billy and Winky Foote - arrived to meet Gracie for the first time and love on Libby too! Mommy had them dressed cute for the occasion. Libby wore her "Big Sister" t-shirt from Mrs. Angela (our drummer's wife) and Gracie wore a cute sundress I found at Target with giraffe print on it. I had surgery that afternoon so I was really groggy when they arrived. Mrs. Billie Gill brought an awesome meal for our whole family that night - pork tenderloin, oriental salad, rice, green beans, zucchini bread...YUM! Thank you Mrs. Gill!!!

Winky could not wait to hold Gracie. And Gracie LOVES to be held... so they made a good match really quick! 



We all hung out that first night as I needed to take it easy. The next day Winky and I had to wake up very early to get Gracie to the hospital for more tests (see previous post for details about that hospital trip). We were there from 7:15AM until 11AM. Billy, Papa Boots and Libby went for a ride in Billy's jeep (Libby's new favorite thing to do)! We all met around noon at Bass Pro Shops for some fun and food. We ate lunch there and by the time we were through it was time to get the girls some shut eye.

We drove home and attempted naps and then BC fixed his special soup for all of us. After dinner we prepared for pool time. The lazy river was awesome as Libby showed Grammy all her new tricks and Gracie floated with me for a relaxing nap on the water. By the time we left there is was time for the girls to go to bed. Winky enjoyed holding Gracie until she fell asleep and then some. Gracie was very comfortable on Grammy's shoulder. 

The next day it was time to have some more fun. We all got up, dressed and drove out to Gruene, TX for some shopping and lunch. It was H.O.T. out there. But we still had fun! Lots of people were interested in our adoption story and they all fell in love with our 2 beauties. Grammy and Papa enjoyed the antique shops best - and so did Libby. It was like a giant treasure chest and she found something on every aisle to play with. 

Above - the pink blouse Libby is wearing is from Wendy's (Billy's sister's) mother-in-law. She also gave Gracie a matching blouse. I think Grammy got some pictures of the girls together in their matching shirts. When I get those from her I'll have to share them. By the time I took my camera out Gracie had already had a blow out that left her matching outfit in need of a wash- ewww!
 
We ate lunch at Adobe Verde and took a family picture at our table:

After lunch we visited a toy store where Grammy bought Libby a cute furniture set to go in her dollhouse and a really cool guitar shaped purse for me. And then it was time to drive home. 

I actually managed to get both girls in my bed and have a short nap with all three of us in the same room.... that is a serious accomplishment! After naps we cooked a delicious meal together and enjoyed family time at the table.

After the girls went to bed Billy showed his parents funny videos he's found on youtube. His parents enjoyed that as we all got some good laughs in.

This morning BC (papa boots) and Winky had to head out. It was over all too soon. We got a couple more pictures of the girls with their grandparents but they were in their pjs still as mommy was moving very slow this morning.


Later today I dressed Libby and Gracie in another matching blouse set that is from Wendy. I got one really great picture of them sitting together and they are both smiling!



Our time with Winky and BC was very relaxing and enjoyable. We are so thankful they were able to drive down and meet Gracie before we're off to camps. It was also really great having Winky as a companion for that dreadful hospital trip for Gracie. I would never want to do that alone!

Billy and Winky - we love you very much! Thank you for everything!


Thursday, July 2, 2009

Update

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,
Cindy