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.

Radical Acceptance

It is not every day that we get to have "normal" family time in our home. We certainly do “special” things as a family like going to the wildlife park, the fair, or the steam engine show. But we miss out on a lot of the everyday stuff.

Most families share meal times as a chance to catch up and reconnect...we cannot do that. To the contrary, Shawn and I sometimes eat in shifts while the other occupies the kids, but for the most part we eat during naptime and after the kids go to bed at night. Yup, that’s right – we eat dinner between 7:30 and 9 every night – depending on how long it takes me to prepare it.

There is an added layer above and beyond the food issues in our home – we have twins. There is so much to do and with two toddlers there is little time to do it all. For this reason Shawn and I are often off and running in two different directions. He runs off to school two evenings a week. I run off to do errands (or just get away!) some evenings and work my 4 hours per week on Saturdays. Because the kids immunotherapy treatment requires them to be free of viruses and the like (and away from exposure to chemicals including perfumes) we swap church services on Sundays. Shawn goes to the first while I stay home with the kids. Then I go to the second.

We have very little NORMAL family time. Sometimes this is really hard to deal with. This weekend I realized just how much we are missing out on in this area.

We had so much fun. We spent Sunday afternoon into dusk raking leaves onto a huge tarp and pulling them to the street to be picked up – the three babies (cousin K) riding IN the pile! Afterward we came inside and enjoyed each other’s company. Shawn and I sat on the couch together while the kids played around the coffee table. With all the running in different directions, I can’t remember the last time just sat together like that WHILE the kids were still awake.

Looking at it now - it was bitter sweet. Much of the “normal” family time stuff is impossible for us.

Here we are – days away from Thanksgiving and trying to figure out how to celebrate without food being the main focus (or any focus for the kids). I guarantee that unless you have lived through something similar to this you can’t truly understand it. We certainly don’t have it so bad. The kids are growing and in overall good health. They certainly aren’t in the hospital for a feeding tube and waiting to find out if they will need a liver transplant like one mom I have met. We are truly blessed. Still there is a stinging in my heart for all that my kids are missing out on. There was a time when we could put them at a table full of food and give them their medical food and they didn’t notice the difference. Not so anymore. Now they cry, beg, and temper. This sucks.

Honestly, I know we need to “get over it” to a certain extent – and we do…every day. I practice one of my favorite things – radical acceptance. Have you ever found yourself thinking about something and just shaking your head “no” or thinking “why?” This is when the art of radical acceptance comes in. When your head is shaking “no,” physically shake it “yes.” At first it really means nothing, but in time it actually helps. Then we put one foot in front of the other – creating new traditions for our children.

I am thankful for all we have. God is God and I am not. Although I am not there yet – today I am shaking my head “yes.”

Put In My Place...There is Hope

I have been put in my place. The message was clear for quite some time leading up to the “big push," but I managed to get pretty far off track.

What was the message? “Be still.”

I had received this directive on many occasions. I actually found peace and comfort in this instruction. For the first time in the twin's lives I was given permission to stop researching, advocating, fighting, and so on. In moments when I waivered and wondered if I was truly supposed to be waiting, I would meditate on Psalm 127:2; “…he grants sleep to those he loves.” I would lay in bed and thank God that He would be “working on this” while I rested. I found myself in the center of the peace that surpasses understanding.

Then one day I discovered an online support group for FPIES families. It was amazing. For the first time EVER I realized that we were not alone in this super rare condition. There were others. The support was amazing, and there was a wealth of knowledge and research avenues to tap into. Suddenly I felt this urgency to work harder, learn more, advocate more, search more, and to find answers. Some of the amazing moms from the group talked a lot about CHOP. One truly amazing mother suggested that since I lived close I should take the kids there. I was on a mission.

I labored hard to get appointments set for the twins with the GI department at CHOP. Since there was a 9 week waiting period I asked for prayer. I requested prayer for a quicker appointment, and many people prayed…to no avail. One of the moms suggested going to allergy first since it was only a 3 week waiting period. With every SINGLE step I was met with resistance. I was forced to beat down doors and jump over hurdles in order to get to both appointments at CHOP. The result? Nothing – well a horrible experience with both departments. Not even worth going into…except to say that I began wondering if I was pushing through doors that God was closing.

A couple of weeks ago God brought me another “message” – "Be still (wait) and know that I am God.”

Since then I have been doing just that. Shawn and I prayed about whether to cancel the next appointment (with the Lyme specialist) and ultimately we sought council from a trusted pastor and decided to WAIT. I decided that I would have to step back from the online support group since it had distracted me so much (I was consumed with it). Instead I have been praying and doing my best to have faith in the promises that I KNOW God has made.

During this time of waiting I have received confirmation on more than one occasion that this is the right thing.

Today Shawn and I were chatting before heading into the grocery store. I told him that I am just trusting that we are supposed to be waiting – that I am trusting in what God has promised – that there will be a light at the end of this tunnel. Shawn agreed – especially when I said; “It’s not easy.” Honestly some days it is not difficult to rest in His promise and there are others when I wonder if I imagined it all.

We worked our way through the store. Shawn and BabyM walked around the store while BabyR (who only wanted mommy) and I headed off to the produce department to get bananas for daddy’s lunch. BabyR asked for the one food he is allowed to have. I had no intention of buying carrots today, but when your child who has only ONE food asks for that food in the middle of a sotre FULL OF FOOD your heart breaks to say anything except YES. At the checkout BabyM and BabyR were munching on their baby carrots. Since they have not been allowed to eat they don’t really know how to chew and swallow. They are in feeding therapy, but at this point they mostly shred the carrot, chew on it for a while and then spit it out. Of course they did this very thing in the store – what a mess – and right in the checkout line. The checkout woman offered a paper towel and made some friendly comments about the mess. For the sake of the kid’s emotional health I had decided not to announce their condition whenever it comes up. Instead I let it be what it is – others just have to deal.

As the friendly woman bagged the bananas she asked, “Why didn’t they have banana since it’s easier to eat?”

We had been chatting about them while she worked on our order, and she seemed really nice. For some reason I went against my recent decision not to talk about the kids condition with people who are unfamiliar with it. I nonchalantly answered, “They have a condition that prevents them from eating foods – carrots are their only safe food and otherwise they take a medical formula.”

“Oh I know exactly what you’re talking about – my sister went through the same thing with my nephew.”

“Yeah right,” I thought. I have experienced people whose child has multiple allergies that think they can relate to the twins condition. I smiled and said, “Oh wow. Yeah it’s hard.”

She asked a couple of other questions and then went on to describe her nephew’s situation. Some of the details were different, but it was much the same. Clearly her nephew COULD relate.

“My sister is very familiar with the medical formula,” she said. “He was on nothing but that until
a few months ago.”

“Really – what condition does he have?”

She didn’t know the answer exactly, but perked up when I asked about Food Protein Induced Enterocolitis Syndrome. She thought that sounded familiar. I told her that we were just trusting God with it all and just waiting.

I could see some of her defenses come down as she answered; “We went through that with my sister. We prayed over my nephew many times. Now he is drinking regular milk and eating whole wheat cereal. So there is hope."

“That is amazing,” I answered. I could feel tears welling up in my eyes, but I held them back.

We chatted for a few more miunutes about the twins and her sister. After a few minutes she reached over to the register tape and pulled off a peice of scrap paper. Retrieving her pen she smiled and said, “I have a special sensitivity for children with special sensitivities; can I take their names and add them to my prayer list?”

I gave her their first names and told her that I was going to cry. She had no idea that God was using her to confirm his promise in my heart.

“There is hope.” I know with all of my heart that He is working this all out. “There is hope…we will soon see the light at the end of this tunnel.”