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
10 comments:
Cindy and Billy,
Praise God for these answers today! Just a thought, when Kael had so many blood tests for his heart surgeries as an infant, the easiest place to draw on was his scalp! It looked horrible, as they put a regular rubberband around his head as a turniquet, but it ALWAYS worked. They couldn't get blood any other way-- it might be worth a shot for Gracie.
We love you all and are rejoicing!
The Sweeneys
I guess we are alike because I have been "watching and praying" all day.
I love you sooo much and am rejoicing with you in this answer even as you wait for more! Knowing He is in charge removes so much of the anxiety from the waiting, doesn't it? And you know that you are being like Jesus--and like a mommy with a heart of pure love--when you care more about Gracie Lu's needs than your own. But WE care for you and are praying His best in your life, always.
May He give you sweet rest as you sleep tonight. Praying toward that as I head that way myself!
Praise God! We went through similar circumstances when my 17 yr old was about 4-5 months old. We were on pins and needles for days. Never did find why the enzymes were elevated in his liver. He had asthma at the time and was not responding to meds. Our church prayed for 4 days while we waited. Everything came back normal! We had to do the blood from the scalp too. He had a cup on his head to keep him from knocking out the iv/drawing stem. Winky looks amazing! I want to know what herbal tea she is drinking. WOW! Blessings on your great news. God is faithful!
Yeah that is amazing news! I wanted to share that when my son was 2 he had a blood disorder that called for taking blood for tests 2-3 times a week. I know he was much bigger than Gracie but it was crucial that I had him extra hydrated before we went. It helped the nurses find and stick the veins much easier. Maybe Gracie could have an extra bottle or even some pedialyte before you go in for the testing. It may help with her veins a little, worth a shot :) We will be praying for you.
The Lewters
AWAA family
What great news!!! We continue to pray.
Blessing,
Kim
Cindy,
Thank you for keeping us updated on both you and Gracie. We will continue to pray for your entire family.
The Reeds
Hi Cindy and Foote family,
So glad to hear the great news that Gracie does not have to deal with homocystinuria and have a restricted diet.
I am praying that Thursday will go much easier.
It sounds like great advice from other moms, especially the hydration.
I agree with you, Cindy, that the liver enzyme stuff is probably from her litte body having to fight off so much.
Just wanted to let you know that I am adding my prayers for your family to the prayers of so many others.
Love and hugs and prayers,
Debi
Cindy,
Praise God that she's finally starting to get positive test results and feel better!
FYI, Micah David also had higher liver enzyme levels post chicken pox. They will retest him tomorrow to make sure they are now normal. Not looking forward to the blood draw but its a necessary evil.
Praying for you!
Kim
praying for you and your sweet little girl!!!!!!!!!!!
Great news to hear that they did not find that enzyme. Praying for more good results with your tests and your daughters further doc visits.
- Dave and Gina Holland
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