Thursday, December 16, 2010

He Has Been In Every Detail

It’s really hard to even know where to start writing today. Since the last time I wrote I have been in such a funk. My faith has been tested in ways that I have always known were possible – when you venture to boldly ask God for a change in circumstances. In fact, I have feared becoming angry at God if he were to “let me down” and instead accepted that he is in control. I am not suggesting that accepting that God is in control is a bad thing – it is obviously not. I am just not sure that my motivation was exactly right. I have often heard songs that talk about trusting in God through the storms and they have scared me…would I trust him if were going through whatever the song is talking about?

So over the past 10 days I have just been a mess. I have in fact been so angry at God. Before I really let myself go there I emailed my closest friends and family and told they that the kids needed prayer. I told them that I needed prayer – spiritually speaking I could not stand on my own. I could certainly not go to God and pray about the situation. I needed all of them to do that for me. It was that very same day that while I was praying (not the pretty flowery prayers) and in my hurt, fear, and anger the title; “Footprints in the Sand” popped into my head. In that very moment I just sobbed – I sensed God telling me that He was carrying me right now.

It took 9 out of the 10 days for me to really let myself be as angry as I have been. That was yesterday. I had a melt-down. I screamed at BabyM because she wouldn’t stop fussing. Yup that was productive. I realized afterward that I was really just looking for someone to scream at. I spoke to my mom after that and was just crying about it all. Having 2 chronically ill children – with a syndrome that almost nothing is known about – and getting worse seemingly by the day – I was just DONE. I got to work and had the opportunity to talk to my boss about it. How lucky am I – he is a pastor and a psychologist!

I was finally able to get out just how angry I was. I was finally able to say out loud that I was angry with God. I told Pastor Al something that I had dared to say a few days earlier to my sister. “I feel like either I am making a fool of God or he is making a fool of me. I have been “hearing” from God – most of which is recorded here – I have trusted him – I have declared him – and LOOK.” Even in feeling like this – I knew (and know) that God wants good things for me and my children. As Pastor Al was addressing my comment, Jeremiah 29:11 came to mind… “I know the plans I have for you declares the Lord; plans to prosper you and not to harm you.”

Today I woke up feeling refreshed and started the day well. Then around 9:30 in the morning the phone calls started. I had met with the kid’s primary doctor (also the allergy specialist) the day after we got the news about the feeding tubes, but he wanted time to consult with his colleagues and think on it before moving forward. He was finally getting back to me. I spent all morning and into the afternoon talking with his assistant on the phone and via email. Things were not looking very good.

The expert in LDA (the kid’s immunotherapy) thought they should be switched from the
sublingual administration (under the tongue) to the sub-dermal administration (a shot in the arm). He just didn’t see how any 22 month old was going to hold the serum under the tongue long enough for it to absorb. I had this same thought upon administration of their last dose – and the results support the theory. The last dose didn’t really show us any improvement at all. So what’s the problem? The sublingual administration is experimental – and for that reason FREE for BabyM AND BabyR. The price of LDA? $210 per child per dose! Our doctor offered us a discount for the second child so it would be $210 plus $150. When Doc’s assistant told me that – I told her it might as well be two grand – we just didn’t have the money. That initial call lasted a long time. When we ended the call I was choking back tears, and I am sure she could tell. I immediately started making calls to see if there was any way for us to raise the money – and quickly – they are due for a treatment NOW.

I called a foundation in PA that helps families with chronically ill or critically ill children. The kid’s nutritionist had JUST told me about this organization last week! As it turns out we meet all the criteria to receive a grant from them. We just need to be referred by a medical professional or social worker. Before I could even get that ball rolling with the kid’s early intervention case worker I got another call from Doc’s assistant…”He is going to continue giving it to you for free…for as long as it takes. If your financial situation changes down the road we can talk about changing things, but as long as they need it…” All I could say was, “that is amazing.”

Over the remainder of the afternoon she and I ironed out all the details to get the next treatment ready and scheduled.I told her to let Doc know that I will find money. I don’t know if I can find it all, but I will find as much as I can. She just reassured me that it would be ok and that it doesn’t have to consume me.

These people are such a blessing.

As the day went on I continued working out the details. I found another possible way to pay for some of the treatment. Then I got a knock at the door and a FedEx driver handed me a package. I was not expecting anything. It was from the formula company. They sent our emergency formula overnight, but the only problem was that the emergency was a week ago and the formula already came. Upon calling the company I learned that it was an error and because I was “inconvenienced” I could keep the formula. Wow – what an inconvenience – that is $156 worth of formula that I would have ordered in a few days!!!

Later in the evening when I was explaining all the events of the day to Shawn, it occurred to me that none of this would have happened if we had not received such terrible scary news 10 days ago. The news that pushed me to my limit (mentally, emotionally, and spiritually) actually changed things. If we hadn’t gone to see Doc after the news from the GI doctor and told him we needed a plan, the kids would still be getting the sublingual (inferior) form of their immunotherapy. We also wouldn’t have started another medication that shows big promise for kids with GI issues. These two developments are HUGE.

On another note – for the last 7 days, BabyM and BabyR have taken WAY more formula than ever before. They have actually been consuming enough calories – not just to maintain weight but to actually GAIN!

I do not believe ANY of this to be a coincidence. I believe that God has been in control from the beginning and we as humans often have to wait to see the big picture to realize just how involved He has been in every tiny detail.

Waters rose as my doubts reigned
My sand-castle faith, it slipped away
Found myself standing on your grace
It'd been there all the time
Caedmon's Call

Note to FPIES Mommies
Our doctors (environmental medicine) believe that our children may have been sensitized in the womb. The team has instructed us to stay away from foods consumed in quantity while pregnant. They also want us to consider using a VERY rare diet to find passing foods. As examples they gave ostrich and alligator for meat and quinoa for grain. They said these are examples and that ideally you don’t want to give any food too often as they may sensitize to that food – obviously this is not really going work for kids with so few safe foods, but still interesting information.

I hope to report BIG changes after the treatment. We are scheduled for this coming Wednesday and food trials have to wait for 10 to 21 days for the T-cells to mature.


  1. Wow! I am in tears here! Gary and I both are just in awe of the faithfulness of the Lord! You and Shawn and the babies are such a testiment! Reading this is so encouraging! Know that everyday you have our prayers! Can't wait to get together with you two! Love ya!

  2. We are also in awe - especially of how good and faithful He is while we are lacking in faith and endurance. He is so good.

    We can't wait to get together with you guys!
    Love! Nichole

  3. I know moms on BBC have reported reactions to quinoa. Cant say I have seen anything on alligator or ostrich! yum!

    Oh Nichole! So sorry happy to hear they are gaining. And just a reminder that it is ok to be angry at God sometimes. He can take it :) He knows. And I am positive he understands! He watches his children hurt every day! Hallelujah for the blessings and the help you have received.

    Am I misreading something here? Are you pregnant?

  4. Thanks for ALL your encouragement Nichole.

    Now...I have to read this post again to see where I led you wrong...NOT!

  5. ahhh - I see.... they want us not offer the twins anything I ate while I was pregnant with them! : )