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

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!

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

Prayer Requests....

So... a prayer request or two for you mighty prayer warriors....

A couple of weeks ago - right after returning home from Ethiopia and in the middle of my stomach illness - I discovered a lump in my right breast. After a sonogram revealed a complex cyst that was one inch in diameter my doctor suggested having it removed. I had a surgery consultation today and it was determined that I will have surgery on Wednesday morning to get the lump removed from my right breast. It's probably nothing but still have to go under to get it done... boo! 

But that's not my biggest prayer request... this one is.... Right after that surgery consultation this morning we got a phone call from Gracie's doctor.. It seems - from her basic lab work - that Gracie may have "homocystinuria" which is a metabolic enzyme disorder that is genetic and would require a specific diet her whole life - not to mention a very specific formula for her infant years. During the phone call the doctor ordered us to go to Christus Santa Rosa hospital immediately to do a second round of labs to be sure the first lab reading is true. I'm praying that is was not and that she does not have this. We'll find out Monday (a week from today) what the results are.  If she does have this we will be meeting with a metabolic endochronologist (spelling?) to do further testing and learning and then we would also need to meet with a nutrutionist and change Gracie's formula immediately. The endochrinologist talked with our doctor today and was very encouraging saying that if we change Gracie's diet she will avoid most of the other problems associated with this disorder. That is good to know because when I googled "homocystinuria" online today it was a bit scary siting dislocation of lens of eyes, skeletal abnormalities, intellectual challenges, and problems with connective tissue/muscle development, and heart problems as just a few of the problems that can arise with this disorder if it goes untreated.

It's been a long day, but we are well. We watched so many other families in the hospital with severely disformed, sick or mentally handicapped children with much more of life struggles to manage than we are facing at this point. We know that we were chosen for Gracie and Gracie for us. We know God heals. We know God gives endurance and strength and wisdom. We know he takes weaknesses and combines his strength to it. We know he works all things for the good of those who love him. And we know we love Gracie and would have taken her in to our family even if we had known this in advance.

Lastly - Gracie also had a chest xray today because her TB skin test came back positive enough that the doctor just wants to be sure its not there. She has no symptoms, but by tomorrow we should know 100% if she really has TB or not. I really don't think she does. But if she does, she will be on antibiotics for 6 months or so.

We appreciate your prayers this week as I face minor surgery and we all wait for more concrete news regarding Gracie's health. 

Gracie's First Doctor's Appointment

This morning Gracie and I were out and about by 8AM for her first doctor's appointment. I am so mad at myself for not making that appointment BEFORE we left for Ethiopia because once we got home, we had to wait a whole 10 days before we could get her in. And today we found out she has raging ear infections in both ears that I did not realize she had. Poor thing has been so laid back and tough, but has had to be in so much pain. I can't imagine how she has been so pleasant and smiling so I'm really excited to get her fully well so we can see just how happy and wonderful she can fully be!

The doctor really took time to talk through everything. It was a long appointment as we discussed her medical history - the little we know - and her previous malnutrition. By the end of the appointment the doctor had given her 4 vaccination shots - 2 in each leg, 1 tb test in her left arm, and a heel prick to take blood for some basic lab work. She was not too happy about all that, but did well considering the trauma along with already inflamed, painful ears. Poor thing! The doc also wants us to go to Methodist Children's Hospital soon so we can have some more intense lab work done to rule out any parasites and other infections. We want to make sure we've checked everything so we can get this sweet baby well!

But my, my how this girl is growing... she weighed in today just under 12 pounds! WOO HOO! She was 11 pounds and 14 3/4 ounces. Awesome! And she is also 24 inches long. 

She is getting stronger and stronger everyday. But the doc did suggest we get her some physical therapy just to give her a head start on catching up. He said to call Easter Seals because they will come into our home for free to help her. I'm calling tomorrow to see how that works.

We will go back to the doctor on Thursday for the doc to see her TB test area. Then in 3 weeks he wants to measure her weight again and in 6 weeks we'll have another check up with more vaccinations. 

We started Gracie Lu on antibiotics today and also some other medicine for her "thrush" and he also gave me a plan for her diaper rash that could also be a yeast infection. The girl is so happy that you would never know she is in that much pain.

I think I am getting well - at least I have felt much better today. I had mild diarrhea (I know - tmi!) from the moment we landed in Houston. Then on Friday I threw up and the diarrhea took a turn for the worse for 24 hours straight. Throwing up ended, but diarrhea did not - so now that's being tested to make sure I didn't get some parasite or something from Ethiopia. We'll see....

We're all doing well despite the illnesses (and the dirty house!). God has been so good to us!

 

Life With Gracie and A Special Father's Day!

We have been home just over one week and what a week it has been. Among the challenges of jet lag and getting an infant on a schedule who is also jet lagged and well... just plain old sleep deprivation, I (Cindy) got a stomach bug that left me throwing up and suffering from severe diarrhea for 24 hours... and it is still causing some trouble even today... so that was a pretty big set back! However.... Gracie is already on a schedule (she eats EVERY 3 hours - day and night!) that works for us and her for now... until the doc. tells us to do something different. She wakes around 6 AM for her bottle, then has wake/play time and then a nap that starts about an hour before her next bottle, but doesn't last the whole hour just yet... we're getting there. Billy had to take on ALL the feedings during the 24 hours I was sick. He was SUPER DAD! And he also woke up the next morning with a great appreciation for my getting up for the previous nighttime feedings and is now totally taking on 1-2 feeding a night for me from now on - WHAT A SWEETIE!

Life with Gracie is wonderful. Libby has really adjusted well and is so much happier now that we're home. The Lord has shown us some great ways to tackle a few of her issues and it seems to be working so far. I'll probably share more about that at another time.

I'll let the pictures speak for themselves except that I have to share one more thing... Billy is amazing! Though the last month has probably been the hardest in both our lives, we have pulled through it together. We're on the same page and he has been so supportive, encouraging, hopeful and helpful the whole way. He was celebrated greatly today for being such an awesome dad and husband on this special Father's day! We gave him a card with both our girls sweet footprints in them. Then we took him out to lunch. We gave him permission to buy a used jeep if he can find one he wants. And we went to the pool to cap off the night. I am so blessed by Billy Foote. The thing that keeps swelling my heart for him today is his long drive to visit Gracie's birthmother on the same day we arrived in Ethiopia after DAYS of travel. He was such a great daddy and husband to do that! And also his wonderful care of Gracie when I was sick. He never complained and just took over for me. Love that man!

Libby was taken care of by my friend Cristie and I am so thankful for that! We may have lost our minds if we had to handle her when I was throwing up. She did not understand why I was sick. She had never seen me like that before and she wouldn't leave my side...so the Martines stepped in and took her out for a great play day. Thank you Martines!

Thank you also to all my dear friends who have prayed and who have brought us meals over the last several days and more! Thank you all so much for your TLC!

Okay - enjoy the pictures.... (including Gracie's first swimsuit... so cute!) Oh - and I just realized that I can't find the pictures of Gracie in the Moses basket that Billy's parents shipped to us... it might be on Billy's camera... so I will try to find those tomorrow and share that too!

Libby loves on Gracie after her bath. Libby is turning into a great big helper...especially at bath time.

I love how she sleeps. So peaceful!

A picture of jet lag

And more jet lag....

and more jet lag...

Look how tiny she is next to Daddy!

She smiles often!

Such a cutie (sorry the last 2 are sideways.. oops!)

She learned how to pull the toy quickly to get the music on. 

Resting on her leaf.

All lotioned up and shining - with a bow, of course.

Sweet Sisters!

Daddy and his girls.

She is growing closer and closer to Billy as I am having to attend to Gracie so much. Daddy is FUN!

The morning of Father's Day... I just love that top on her!

Family Photo at Houlihann's where we had lunch... yum!

Aren't they all so cute together!

Father's Day evening at the pool... just relaxing as a family.

One of my favorite photos of Gracie so far. Her face is starting to clear up from all the chicken pox. Isn't this swimsuit the cutest! (Thank you Elissa!)

As soon as I put the hat on she cried her eyes out.... I don't blame her!

Pretty Libby in the pool.

Floating with Gracie.

Me and my girls!

Sun Bathing Beauty.

So kissable!

We're Home!!!

We are home. We walked in our house sometime after 10pm last night. Our last flight was delayed, hence the late arrival home. We had a wonderful group of friends meet us at the airport upon our arrival with balloons and signs and flashing photography. We know and we feel that we are loved and we know that Gracie Lu sense's that too. She just smiled at everyone last night.

We had a rough night due to jet lag. Gracie didn't sleep much at all since our night here is her day back in ET. Libby slept from midnight to 5:20 AM. But we will push through the jet lag in time. Gracie's chicken pox are - for the most part - looking better. Now she just has a cold with green mucus so she sounded like a snoring puppy when she did sleep last night. Hopefully we can get her in to see the doctor early this coming week.

Billy and Winky, the beautiful Moses basket arrived and Gracie Lu is taking her nap in it right now. I will try to call you today sometime.

We are going to take the next few days to figure out Gracie Lu's schedule and get over jet lag. We're going to relax and enjoy some private family time, just the four of us. I am already loving it!

We pray all our traveling buddies made it home safely. We will try to be in touch with all of you soon!

I plan to share some more about out trip to ET, but I want to take my time to think it all through and jet lag is muddling up my mind right now. There are many things we saw and experienced in ET that have stirred my heart in one way or another.

I want to thank all of you for praying us through the last month or two of our lives and particularly the last 12 days. Without the grace of God and your prayers on our behalf we would not have survived with such peace and determination and hope. We would have buckled under all the pressure and been depressed or angry. But no - we are, even in the midst of trial and exhaustion - full of joy.

We have such love for all of you. Gracie is beautiful. Libby is doing great so far and seems very happy to be home. We are incredibly blessed.

This post is not the end of the story. It is only the beginning!

Blessings,

Cindy