April 14, 2013

Filed in: GA-1, God, Life, Reagan, Thoughts

This post is going to be all over the place, but I have a lot to get out and this is my place to share my feelings and update everyone who is following Reagan’s story.  So, here we go.

April 2, 2013

I spoke with Reagan’s dietician…after an increase in her protein intake b/c of her prior test results, the next round of tests showed her Lysine levels still low at 28, they’re up from 16 from the last tests, but they like to see them in the 45-90 range.

This is good news b/c the Dr.’s prefer to see this level low…when it’s low, it means her tolerance for protein is higher…so we are upping her protein intake again!

All her amino acid levels were great…the only other level that was high was her carnatine level which is what her medicine is…so they are lowering the dosage on that.  It sounded as though since it was high, she’s using all of the medicine and just peeing out any excess.  (??? I’m not a Dr. and I don’t pretend to be one in real life).

While I don’t understand the science behind any of this, what I do know is my baby girl is growing and they are upping her protein.  I love this type of good news…and two test results in a row, with good news, is what mamma likes.

But, leave it to Satan to make you doubt God almost within the same breath b/c as I was giving Rob Reagan’s test results, Rob let me know our insurance cancelled our policy b/c we didn’t make a payment.  Our payments are on auto-pay so how could this happen?  Long story short, it seemed like a billing issue on their end, and even though it cancelled on 4/1 at midnight (just 12 hours prior to our call…nice April fools joke) they were telling us that they would need to re-underwrite us and determine if it was “worth renewing us based on our claims.” Yeah, um, no! We met our deductible within the first week of Reagan being here; I can tell you we would not pass the underwriting process.

I got on my knees to pray…without our insurance, paying for Reagan’s care would be extremely challenging.  Each time blood is sent to the lab, which is every two weeks at our Nemours appt, the cost is $600-$800, but somehow our insurance covers almost all of it…the bills we receive are about $20-$40.  Totally God.  As self-employed folks, Rob and I picked a plan four years ago that we thought would be acceptable and affordable.  It wasn’t the best, it had a high deductible, but if we ended up in the hospital with a crazy problem, we’d be covered.

So, the good news is Rob spoke with someone else at the insurance co. who said it really wasn’t a big deal and they re-instated us right away. Another answered prayer.  I shot a laser beam up to God that day and boy did he deliver.

April 9

Next apt. at Nemours…Reagan is now 8lbs 15oz, she’s gained almost 3lbs since birth and she’s eating ALL of her allotted formula recipe for a 24 hr. period, plus a feeding of her RX formula.  Let me explain…

For a 24 hr. period, Rob and I have a batch of formula that we have to make…it includes a certain gram count of Enfamil and a certain gram count of her RX formula.  If she eats all of it, then she can ONLY have her RX formula as to not give her too much protein.  Rob and I log every single feeding and provide the food log to our dietician at each visit.

We keep track of what Reagan eats and what she discards for every single feeding.

We keep track of what Reagan eats and what she discards for every single feeding.

The dietician has been floored by how much she’s eating due to her size and weight. But Reagan is doing exactly what they want down to a T as far as weight gain.  I love it when her Dr. and dietician have huge smiles on their face b/c they are so happy with Reagan.

“Her tone is great, she’s gaining perfectly.” – Reagan’s geneticist.

“I can’t believe what a thirsty girl she is! She’s eating 24oz which is a lot for her age and size.” – Reagan’s dietician.

Great apt. overall…but the last part to every apt. is to have Reagan’s blood drawn; this is the worst part.

Poor baby...she was not happy about this.

Poor baby. She was not happy about this.

They had to draw blood from both of Reagan’s arms b/c nothing was coming out…they finally got it, but I’m sure the entire hall could hear her cries.  Whenever I used to hear a baby’s cries at the Dr., I’d think, “that poor baby is not too happy.” And watching it is heart wrenching.  Bright red face, cries that empty her lungs and then turn into silent cries until she takes a HUGE breath only to empty it all out again.  It took about ten minutes to draw one vile of blood.

April 12

Results from April 9 are in…her Lysine level is still low, at only 27.  I feel like doing the chicken dance b/c my daughter wants MORE protein!! All her other levels were great too and the carnatine level is coming down due to a decrease in her medicine. 🙂

The in-between time

In between April 2 and today…I’ve received a couple notes from a girl I went to high school with.  I haven’t seen her in probably 10+ years, but we’ve exchanged notes a few times.  I love seeing how God has brought my classmates to him, like he did with me.  People change a lot btw high school and “real life” and God is after EVERYONE, he doesn’t want to leave anyone behind, like the Shepard who goes after the one lost lamb.

On my birthday, she said that God laid it on her heart to ask what I needed prayer for.  I unloaded a lot of stuff…I am praying for God to heal Reagan, to specifically heal her gene b/c only God can do that…but what if that’s not his will?  What if his will is for her to have GA-1 and to deal with it? Am I unfaithful if I ask for healing, but then say, “but if you don’t want to, I understand, can you help us live with it then?”

My friend wisely responded with the truth that you can’t ask God for things and say “I trust you…” while in the same breath basically say you really don’t.  It’s like praying with a half portion of faith.

So then what do I pray?

My friend emailed me this ask God to give you clarity about what His will is, period. His will not for your life or your daughter’s life…but just His will period. You have to trust and believe that God has purpose for all of this…”

Jesus taught us how to pray when he gave us the “Our Father” prayer…”Thy Kingdom come, Thy will be done, on Earth as it is in Heaven.” That’s praying for God’s will, and praying for yours to align with his.

Even still I will pray for a miracle, specifically for God to heal her gene, I pray it with knowledge that he can, b/c I know he is able…and I also pray for his will.  They seem like strange prayers, b/c they could be completely opposite, although, I pray they are one in the same. Jesus did the same thing…he prayed to avoid the crucifixion if possible, but he also prayed for God’s will.

“…My Father, if it be possible, let this cup pass from me; 
nevertheless, not as I will, but as you will.” – Matthew 26:39

God gave him clarity, and made his will known, and Jesus abided and made his will the same as it was in Heaven and he died for all of mankind so that we could be adopted into the Kingdom of God.

I am so proud of Reagan…and I’m proud to be her momma.  I’m also glad that we have a God who walks alongside us in every aspect of our lives, who understands our pain and who wants to be our Rock.  Our God is a God who provides.  This verse is so comforting b/c God has always provided for us, even when we are faithless and doubt him, he is faithful to us…always.

“For this reason I say to you, do not be worried about your life, as to what you will eat or what you will drink; nor for your body, as to what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? And who of you by being worried can add a single hour to his life?” – Matthew 6:25-27

Then, my friend sent me this message a few days later.  I was filled with so much encouragement…

Hi…so while I was spending quiet time with God, I opened my Bible to this verse and God told me to share it with you. “But when Jesus heard this, He answered him, “Do not be afraid any longer; only BELIEVE and she will be made well”- Luke 8:50 xo

I am no stranger to God using people to give me a message in pivotal moments of my life.  In college, a friend of mine came up to me at a retreat and told me that the relationship I was in with a past boyfriend needed to end.  I knew this, and I prayed for God to give me clarity about this specific aspect of my life during that weekend retreat. I remember praying that quick prayer as clear as if I did it yesterday…I prayed it in the parking lot walking up to the gymnasium.  Boy did God show up, not only did a friend of mine tell me that message from God (totally unprompted…and she didn’t know much of my relationship) but I also received two other messages from people I did not know at that retreat saying the same thing.

When God prompts you to say or do something, you know it.  The feeling and the urge is unmistakable…and the messages I received that weekend were clear and left zero room for interpretation.  In a nutshell, I needed to make an about face and start heading full speed toward Jesus…in order to do that, the relationships not glorifying to God needed to go.  I knew this, but each break up conversation was like the George Costanza break-up with Maura. (leave it to me to find a Seinfeld reference in every aspect of my life)

(if you’re reading on your phone, click here for the youtube link)

Eventually it ended and it felt amazing to follow Jesus and make such a life altering, eternally significant decision.

I believed God had something better for my life.  And boy did he, as evidenced by the eleven amazing years that has followed that decision and with the blessing of having Rob in my life, glued to my side.

my favorite.

my favorite.

God always knows what he’s doing. And with Reagan, the messages I’ve been receiving have been pretty clear, not only from my friend, but from my mom. She has been telling me her word from God in regard to Reagan is to “Not worry”. She hears it over and over, “do not worry, do not worry, do not worry.” And so, I try not to worry about Reagan and her diagnosis.  And with each test result and increase in protein prescribed, I wonder…”Is God healing her gene?” So I’m going to ask you all to pray that specific prayer.  Please heal Reagan’s gene…make the Dr.’s baffled.  And please pray for clarity and for God’s will.

comments +

  1. Thelma

    April 16th, 2013 at 2:09 pm

    God is so awesome and wonderful–we cannot even fathom His Grace and Love for us. So, we continue to Believe Him, Trust Him and Follow Him. As He tells us–Do not fear, Do Not Worry, I am with you always–working for our good and not to harm us. Love Him so much and what He is doing in the lives of His children. His love never fails us. I believe with all of my heart, He has touched Reagan and she is healed–I do not doubt what He can do. We will all be giving Him glory, praise and honor for his goodness.

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