Jehovah Jireh

If you were to ask my mom she would tell you that it takes a lot to render me speechless. It’s true.

I am speechless, but overflowing.

My sister-in-law urged me to write this down NOW just the same.

My friend called me this morning and said she had a Christmas card for us - she was wanting to know if I was on my way to the second church service or if she could stop by and give it to us. Unfortunately we were going to miss each other so she decided to leave the card for me to pick up. I went to church and looked for the card, but I couldn’t find it. I figured someone grabbed it for us.

After finishing my errands and visiting with my in-laws this evening Shawn asked me, “Did you see the card?” He handed me a snowy Christmas card signed by my friend, her husband and their two little ones. I walked into the kitchen saying to Shawn, “That’s cute! It’s kind of disappointing though that it’s not a picture card ya know.” (I was kidding.) Shawn handed me a folded piece of paper and said, “Maybe this will make up for it.” I looked at him with a puzzled look on my face. It was clearly a check. I was thinking “Wow - this is nuts - these guys don’t know us well enough to give us money - but thinking of the type of people they are it’s not really all that surprising.” I know that my friend reads the blog and knows what is going on with the kids…

Then - I unfolded the card.

“What?” Tears were welling up in my eyes. I was crying. Stunned.

I called my friend and thanked her for the money. I told her that it is hard to accept gifts, but that I know that is just pride - “I know you wouldn’t have given this if you weren’t GOING to give it. I have to just say thank you.”

She told me that she and her husband were talking about our situation - wishing that they could do something to help. She told me that her husband thought sending money could help. She said God had laid it on BOTH of their hearts to do this. After that conversation she read the last blog entry and they knew they would send money.

This is where I am speechless - and again in tears as I am writing.

Jehovah Jireh.
The Lord Who Provides.

The Good Doctor

Over the past decade or so I have become very disenchanted with the medical community. It was really a gradual process. Some time ago I decided that if I had a specific problem it was best to just go straight to a specialist and not waste my time with a primary care doctor. Somewhere along the line this train of thought evolved into an undercurrent of mistrust in the ability of the specialists to figure things out.

Almost two years ago that all changed. I had twins who were in constant pain and the doctors couldn’t fix it – they couldn’t even tell me what “it” was. I was forced to become an advocate for my children. Like other FPIES parents I was forced to spend hours researching my children’s symptoms. My research paid off and eventually they were put on a medical formula which solved our problems for 4.5 months when we started offering them baby foods. And then it all began again. Only this time the uphill battle was more like a “try and fly to the moon” battle.

Then there was this one doctor. His name kept coming back to me from different people – finally I saw him. Before long I realized that the twins needed to see him. He has been their doctor ever since. He has singlehandedly changed my ENTIRE view of the medical community. He doesn’t know everything. He doesn’t know everything that the twins need him to know. Still that is ok. He is willing to admit when he doesn’t have the answer. He is willing to say – “I need to think about this one.” He once told me that he wanted to consult with his colleagues before deciding where to go next. He is willing to LISTEN to me and he knows that I KNOW MY CHILDREN. It is enough for me that this man is an amazing doctor – it really is. But that is not all he is. He is an amazing person. Here is a man who cares enough about my children that he is willing to give them $450 worth of immunotherapy treatments even though we can’t pay for them – with the understanding that if/when things change with our financial situation we will work on the balance due (which over the year will be $2700 – discounted to $2200).

BabyM and BabyR had their treatment today!!! I was so happy to be able to hand the doctor a thank you card with a $100 bill in it. I explained in the card that this money came to us with the purpose of helping with the cost of the treatment and thanked him for his generosity.

This doctor – and amazing person – called me personally to tell me “I just opened this card from you, and thank you for the money, but wouldn’t this money be better put to use in your pocket?” WHAT!!!??? I explained to him again that the money was not expected and had been given to us to pay for the treatment. He just insisted, “I understand that, but we have some rare food trials coming up and the cost of the foods is really an unknown.” He didn’t want to take no for an answer, so I just told him that I have a faith that sustains me and I am certain that it will be provided for, but that deep in my heart I knew that THIS $100 belonged in his pocket. He agreed to keep it – but it was obvious that he really didn’t want to.
This is an amazing man.

Thank you God for sending him into our lives.

Good Faith Gesture

So, Shawn and I have had a $100 bill in a drawer in our kitchen since June. We have left it there – knowing that there would come a time when we would need it.

When we got the news that we needed to change the kids immunotherapy to an injection (making it no longer free) instead of the experimental administration, we knew we would have to come up with a lot of money. Then when the kids’ doctor said he would keep giving the therapy for free for as long as it took for us to pay him, I knew what that $100 was for. I wanted to put the money in a card and give it to him as a “good faith gesture.” Shawn and I decided that it what we would do…then I began having second thoughts about it. I knew we were going to need to buy heating oil soon. As I was entertaining these thoughts I was driving to the post office to get the mail.

The following two emails tell the story better than I could re-tell it:

Email from Me to my cousin Heather
December 20 at 9:42pm
Hello Cousin.
I don't even know what to say to you. I am just so humbled and grateful to you for your gift!!!!! How unexpected. When I opened your card and reached in I felt the photo card and a piece of paper - which I thought was a note. After I looked at your card and SMILED at your beautiful family (Suzanna looks like her daddy doesn't she??) I looked at the "note" and was just silent for a few moments.

THANK YOU HEATHER!

You have just given us the first payment toward the kid's treatment that we can't afford. Thank God we have a doctor who will give it to them even while we are coming up with the money and not make them wait. I will be bringing your $100 with me to the appointment on Wednesday. I really think it will show the doctor that we intend to pay him. Thank you, thank you, thank you. I love you! I so wish we lived closer to one another. I would like to be able to see your little ones and meet Sean. Hopefully someday that wish will come true.

I hope to be able to report BIG things soon. Isn't it amazing how God will bring you right to the end of yourself and suddenly there is breakthrough? That is what happened over the past 2 weeks. He really did give me ALL that I could handle and then suddenly I could see his hand in all of it.

Well Cuz - have a BLESSED Christmas. I hope you get our card soon so you can see the cutie babies!

LOVE YOU!
Nichole

Email from Heather to Me
December 22 at 12:37am
Hi Nichole!
I got your msg. I read your new post on your blog earlier this week and I was so happy to see that some BIG things were done for your family this week...and I was GIGGLING because I felt that I had an inside joke with Jesus while reading it...HE laid you on my heart last week. Deeper than usual. I carried you close. HE led me to send that check. I made that money at one of my jewelry parties. I was so happy to be able to give it to you. I know $100 goes like a blink, but every $1 counts! Shoot, every DIME counts! I just want to tell you though that this gift WAS from Jesus. Honestly, he allowed me to make that $100 that night and send it to you. He worked out things for ME to be able to... Our God is such an awesome God. I was reading in Luke 11 today of how an earthly father is a sinner and yet if his son asks for a fish, he would not give him a snake...and if he asks for an egg, would not give him a scorpion...it goes on to say THINK how much more your HEAVENLY father gives to you when you ask....that whole TIMING thing is the hardest part for me....especially when it involves those we love...

Anyway, it is late so I am rambling...you are most welcome my dear for the gift...but as I said... I was simply the messenger. I must say that my reward for listening is GREAT though. I LOVE to be used by the Spirit!

Yours, Heather

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.

A Loss to Say Much Else

Sometimes I find myself practicing Radical Acceptance and I can cope with this. Then there are times like now.

BabyM and BabyR had the flu (respiratory) a few weeks ago. With the help of our primary care physician we made it through that. Then a week ago I found myself in the ER with BabyR for IV fluids. We thought it was an FPIES reaction to something in dye free CVS brand “Benadryl” – then Mari started vomiting the next day and we knew it was a bug. The steps I took to make sure our doctor knew this was an FPIES reaction really made this kind of comical in a way. Ultimately I think it was a stomach flu and an FPIES reaction for BabyR but I am not going to go into all my reasoning – I am just too tired. So back to the bug, the kids have been sick for the entire week. Although they have markedly improved, they continue to vomit once a day for the past couple of days – which brings us to today.

We had an appointment with the GI doc – Dr. Fancy Pants. I am not so fed up with him at this point. In fact, I feel that he has proved himself recently. Anyway, BabyM has FALLEN of the charts in weight. BabyR is now falling. They are 22 months old and 19lbs. 2oz and 24lbs. respectively. Bottom line – he told us that because of their weight (particularly BabyM) it is likely that they will be sick all winter and continue to fall in percentiles. He gave us 4 weeks to try and get BabyM REALLY gaining before intervening with a nasal feeding tube. I have NO idea how anyone is going to keep a nasal tube down a toddler’s nose all day every day. When I asked the doctor about this he said we may have to put in a g-tube…surgery to put a feeding tube directly into the stomach.

So here we are – this is ONE of the places I have really feared being in.

Here we are. I am really at a loss to say much else.

When I got home opened my email to find these words from a friend:

Nichole:

As I started to pray for you and your family yesterday, I couldn't get a word out. I just started to cry. I feel all your pain...and your family's too. After so much crying…peace came over me. I know that no matter what happens, it will be hard, it will be painful, but afterwards...it will be ok. The rain will fall (blessings) and the sun will shine again.

I am with you.

At this moment these words are all I am hanging onto.