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.”

The Big Day

Tomorrow the twins and I travel to Philadelphia to the Children’s Hospital of Philadelphia (CHOP) again. This time we will see CHOP GI, and I so hope it is better than our last trip to CHOP (Allergy). I have come to learn from many of the other FPIES mommies that CHOP is one of the few places in the entire country with an in depth understanding of FPIES – not to say they understand a whole lot about it – but at least they are interested. In fact CHOP has agreed to a research project initiated by one of the moms. It is a complete mystery that this could be the case and yet the allergist that WE saw had NO CLUE. My hopes and expectations were so high that I cannot really even express how disappointing our appointment was.

We arrived at CHOP 11 out of the 15 minutes early that they request (after getting up at 4am to get to Philadelphia by 7:45)… just me and the twins. Thank goodness for double strollers. There was a fellow who took the kid’s clinical history. When she was done she left the room, presumably consulted with the specialist and they both came back in after about 25 minutes.

The doctor introduced himself, walked across the room, and announced, “This is not an allergy issue – you’re in the wrong place.” He might as well have punched me in the gut. I said something like, “Excuse me?” He went on to tell me why the kid’s DON’T have FPIES at all. He was bold and abrasive and for all intents and purposes he and I ended up in a verbal sparring match. He was telling me all the reasons the diagnosis was incorrect while I rebutted with the facts. I was quoting research papers, scientific studies and even one peer review ; all of which he tried to act like he was familiar with, but obviously was not. He told me that FPIES was only to one food (if you have FPIES to say milk or rice that ONE food is your only trigger). I wish I had thought to ask him why FPIES kids have to carefully trial EACH food if there is only ONE trigger. By his logic it would stand to reason that if you know your one trigger food you could go nuts and eat everything. Oh how I wish that were the case.

The appointment went on for some time with me unable to really speak to him after a while. I certainly could not look him in the eye. I was so disappointed and so angry. I felt like our big chance was wasted on some doctor who clearly did not SPECIALIZE in FPIES. He finally decided he should review the kid’s medical records and call me back in a week or so. He asked me if this was acceptable, but I couldn’t even speak. NO it was not acceptable. All I could think was that I wanted a new doctor and consultation TODAY but I knew that was not the way a hospital or doctor’s office with a full schedule and weeks long waiting list worked. I think he realized that I had no desire to see him again since he offered for a different doctor to follow up with us. He began to apologize for being abrasive, but sorry too little too late. He already wasted $900 worth of “specialized care.”

When the appointment was over I went to the front desk and said, “I don’t know how it works exactly, but I know there is a doctor in charge here and I want to speak to them now.”

Surprisingly they were very accommodating and seemed to not want me to leave dissatisfied. Within less than 10 minutes the head nurse was talking with me in one of the back exam rooms about what had happened. I was by this time crying (not like me in this situation). So Dr. Spergel came in and met with us. By this time the twins were FALLING apart. But he talked with me for just short of an hour. As it turns out he is one of the TWO doctors at CHOP who truly specialize in FPIES.

Even though our chat with Dr. Spergel didn’t take the place of the consult with the other allergist, it was a worthy conversation. After hearing the twin’s history he inadvertently explained why the other doctor was so dismissive. There are certain aspects of the twin’s symptomology that don’t fit with FPIES. Yeah, no kidding, this is what I have been saying for months. To me there is a puzzle here that no one seems to want to solve. Until now that is. Dr. Spergel’s wheels started turning immediately. Although it is not his area of expertise, he thinks there is a co-condition – perhaps a problem metabolizing fructose or another sugar. He talked about this puzzle that we were looking at. FINALLY – someone else sees it. Dr. Spergel assured me that CHOP GI was the right place for the next step in putting the pieces together. Because of the events of our botched allergy appointment Dr. Spergel is taking over the twin’s care. That is a definite blessing in disguise!

We see CHOP GI tomorrow. And so, I am very excited but also nervous. I don’t want to get my hopes up too high.

Day 2: She Let Daddy Hold Her

Phew. Finally – a moment to take a deep breath and slooowly exhale.

Since deciding to postpone BabyR’s procedures this week – I have had this nagging feeling that I am supposed to be doing something. We were supposed to take R into the hospital yesterday and at this very moment I would have been watching him “come out of” the anesthesia. Yuck. Although we will probably be doing the procedures in a few weeks I am very glad that my little boy is not going through them right now.

When our GI doc told me that he wanted to use test results from one of the twins in order to diagnose them both I was annoyed and irritated at the concept of treating two DIFFERENT patients based on ONE set of tests. That was BEFORE BabyM went through her procedure. It was pretty awful.

Poor baby had to be wrapped up in a blanket like a little baby burrito (the nurse’s term) and then have a feeding tube forced down her nose. Next she had an IV put in her hand (wrapped up like a burrito again). At that point she didn’t trust being laid down and it wasn’t until we were home for a while that she didn’t cry and fight against being laid down on her back. After a start like that it is no surprise that she was not willing to let anyone near her for anything else. That sure made things difficult as she had to have her vitals taken constantly (a little too much for what we were there for if you ask me). With Lancaster General being a teaching hospital it made it much more difficult on BabyM to have to accommodate the student nurses. Honestly if we were going to be there for any amount of time I would have told them no more student nurses – at all. The staff nurses were great and BabyM loved – well liked – Nurse Lauren (she was obviously experienced as a pediatric nurse).

There was one nurse who I would have had to “throw down with” had we been there longer. Oh well – when you are as involved with things as I am – it is bound to happen.

BabyM was a riot when she was feeling ok – and aside from being messed with she did really well. She wanted to go “out sieeed” which meant in the hallway. We would walk down one end of the hall way and she would say “moh, moh” (more) and we would go again. By the evenings she was so bored that she was RUNNING up and down the hallway – with me trying to keep up with her IV stand. At one point she got going so fast (she saw that the door off the ward was opened) that I almost yanked her feeding tube out by not keeping up with the IV stand.

Even though we were admitted around 9am it wasn’t until after 10pm that she started emptying her bowels. Ugh. If only the staff would have listened to Shawn… They were pushing 8 ounces per hour of the prep liquid via the feeding tube. This baby is not even 20 pounds and only eats around 6 ounces ever 3 or 4 hours. Shawn told the nurse she would be throwing it up at that rate. I am fairly sure that if I had been there at the time I would have insisted that they contact our doctor and start more slowly. Unfortunately I wasn’t there and by the time Shawn told me about it didn’t occur to me to have the doctor called. Sure enough it didn’t take long for her to start throwing it up, and the nurse decided to turn it off altogether. By the time the doctor was called and it was started up again it was around 9pm! That was a LONG night.

The next day we had to wait a very long time for the procedure to start. At least on the day of prep BabyM’s belly had the sensation of being full. The day of the procedure she was weak, tired, and hungry – she couldn’t have ANY thing to drink or eat – not even water or ice. She asked for milk often but she did great.

The staff was great; they wanted to wheel BabyM down to the OR in her crib. Yeah right, I insisted they let me carry her or hold her in a wheel chair because I knew she would just stand and cry. One great orderly was willing to accommodate and after realizing that they couldn’t really wield the crib and a chair she asked me if I wanted to ride in the crib. Ha! I had been in the crib most of the day and night anyway. BabyM got quite a kick out of going for a ride as we both sat in the crib – sides up – being wheeled through the hospital!

The nursing staff in the OR was great too, but it was pretty miserable to watch them walk off with my daughter. I am so used to being right there for everything – making sure there are no mistakes made. This was the time I HAD to let go of control though. The wait was long, but finally our GI doc came out and talked to me. He didn’t see much. We would have to wait for the biopsies. The anesthesiologist came out and talked to me as well. I SO liked Dr. Mike. At my request, he came onto the pediatric ward to consult with me the day before. I was concerned with giving BabyM the choice anesthesia since it contained soy oil. Given that BabyM has both an IgE allergy and a cell-mediated (FPIES) allergy to soy I was very concerned. Even though an allergic reaction to any oil is rare, Dr. Mike was patient and not all condescending to my concerns. We came up with a plan to preemptively treat BabyM with Benadryl for any possible IgE reaction and a steroid to combat any delayed, cell-mediated reaction. After the procedure Dr. Mike came out and told me that she did great. He had begun to push a small amount of the propofol and waited to see if there was a reaction, then a little more, then he gave the rest. We have been spending SO much time fighting for doctors to hear our concerns and proceed with caution – it was so refreshing to have someone like Dr. Mike.

BabyM was back to her normal self just a couple of days after getting home. By day two she even let her daddy hold her!

THE NEWS:

The scope ruled out any inflammatory bowel disease, crohn’s disease, ulcerative colitis etc.

There were no Eosinophilic Disorders (EGIDs) revealed. The good doctor decided to tell me that we could have missed this since BabyM was mostly on an elemental formula. We had known that and had been trialing some foods to trigger her immune system, but after hearing from him after the fact – we probably should have given her an extreme trigger (milk) in order to fully rule out EGIDs. Thanks for the info AFTER the procedure.

He did see nodular lymphoid hyperplasia – which is a common characteristic of food allergy he said. I have found this to be seen in FPIES after talking to the moms.

We are still waiting on the Lyme tests to come back.

Here We Go!

September - time to hold on tight for a wild ride.

Thursday BabyM will be admitted to Lancaster General for her “prep,” followed by her colonoscopy and endoscopy on Friday. This will not be all that fun since she will have to fast for more than 24 hours and will more than likely have a nasal feeding tube put in to drink the prep liquid…which will then force her bowels to dispel EVERYTHING.

Our favorite Doctor Sullivan is in agreement that we should take this opportunity to run Lyme and Co-Infection tests on a biopsy. Now we are just hoping that the GI doc agrees to give us an “extra” biopsy. Honestly though, I have yet to meet a doctor who is fond of another doctor saying, “oh, by the way, you’re not going to run all the tests that should be run…let me.” This should be somewhat interesting, but my hope is in God so I have no doubt that it will happen.

As it turns out, I am not nearly as annoyed with our GI as I thought I was. I was able to speak with him voice to voice (without going through the nurse) about why he was not ordering scopes for both of the kids. Although I didn’t totally agree with his reasoning, it did make sense on one level. I am convinced that the nurse – the communication barrier – is the problem here. When I was able to make my position clear to the doctor he agreed to order BabyR’s tests. So as long as BabyM’s results don’t show an infectious disease, BabyR will have his scopes on the 24th of this month. If there is an infectious disease on BabyM’s results, the doc wants to treat them both as a matter of course. I don’t agree with this approach across the board, but we’ll see.

So...

2 days in the hospital with BabyM this week

A trip to Germantown on Monday to see my Lyme doc

Away on a MOM’S WEEKEND!! (This is SO great, but given our schedule this month I would have changed the date of my trip if I hadn’t already bought the plane ticket.)

Back just in time for our trip to Philly for a double appointment with CHOP Allergy

Then back to the hospital for 2 more days for BabyR

All of this happens within a 2 week time period.

Here we go!

Poor Baby

It has been a tough couple of weeks for the little ones. We have trialed some foods…avocado, plum, and pears and challenged the “new” formula (Neocate Jr.) the GI doctor put them on.

The result? Fail. Fail. Fail. Fail/Pass. The fail/pass is really no surprise at all. We have suspected for some time that the Neocate Jr. was causing a reaction for BabyM and BabyR – sure enough when we removed it – we began to see improvements in their appetite and stools. Two weeks on the old formula (Nutramigen AA) and they both passed their FIRST FORMED STOOL in MONTHS! So the fail was the new formula and the pass was the old formula. I just heard back from our Nutritionist and the “old” formula leaves them lacking in some key nutrients so we will have to have a special supplement compounded by the Cumberland Apothecary.

It seems that we are always going one step forward and two steps back. Poor little BabyM has become SO constipated as a result of the formula change (believe it or not this implies that she is NOT reacting)! Last weekend we had to give her a suppository – which was traumatic, but it worked. Even though we followed up with a daily magnesium supplement (which before Neocate Jr. worked great), today marked another 5.5 days since BabyM passed any stool. Great. Last night we gave her milk of magnesia (per our favorite Dr. Sullivan) and this morning she was in so much pain and couldn’t pass anything. So I had to take her in to see Doc. Poor baby was crying and screaming; “No, no, no, no, no…” So before nap we had to give her a fleet enema – that was AWEFUL – but thank God for Bethy.

She still has some pretty extreme “stool passage” ahead – I hope she can get it all out tomorrow.

What a tough couple of weeks for them. Trialing foods is no small thing on their little systems. After pears BabyR was up most of the night and screaming for much of it. Both BabyM and BabyR had similar issues following the other foods but not nearly as extreme as pears... which is frustrating since pears are almost unheard of as a trigger food for FPIES babies.

For any of you FPIES mommies – we had mood changes: irritability, aggression, fussiness etc. as well as allergy ring diaper rash (plum), malabsorbed fat curds in stool (avocado), fever, sleep disturbances (major with pears), ENT irritation and itching, increasingly loose stools, mucous, reflux (gone except during reactions).

Well big things are happening this month. There is lots of news in what we are doing for diagnostics in September, and I will write about all of that…another day. This has been a long one – and it is almost time for BabyM's next dose of milk of magnesia.

Poor baby.

A Good Day

I believe in God. I believe that we are created – with a plan and a purpose. As part of that purpose I believe that while fathers are created to provide for and protect their families, mothers are made to nurture and nourish their families.

It seems that somewhere between work, soccer practice, dance lessons, PTA, and the million other things that mom’s facilitate today, we (as a society) have lost sight of this created purpose. We have turned to pre-packaged, boxed, and frozen foods. I am not judging – life for us is crazy too – I made a frozen pizza for dinner this week. The other night Shawn said to me, “You love cooking.” It was 8:00 at night – the babies had just gone to bed and it was time for me to START dinner. I explained to him that there was a time when I loved cooking, but given the circumstances of our lives I can’t stand it anymore. I still like food but I sometimes find myself disgusted with the prospect of preparing it. It has only been since that conversation that I realized I have been in a food depression.

With BabyM refusing to eat for weeks now and BabyR refusing for at least a week, I have been consumed with frustration and a sort of anxiety. I have been trying to get them to eat ALL DAY – offering the sippy cup again and again – to no avail. This fight has become all consuming lately. Without any change we would most likely be heading toward a feeding tube.

I prayed for wisdom. Many others prayed as well.

Today I decided that the only thing left to look at as THE offender was the formula we had switched the twins to a few months ago. This switch mysteriously coincides with the flare up in their symptoms, but so many other things did too. What’s more, the GI doc told us that the old formula was not nutritionally complete for toddlers AND that there was no way for them to react to this formula since it was also an amino acid based elemental formula. Wow. We continue to learn that he is really not paying attention. As it turns out the old formula is designed for both infants and toddlers – this is regulated by the federal government so they can’t just say that if it’s not true. AND to add insult to injury, many of the FPIES moms have experienced reactions to the new formula as well.

So the challenge…Nutramigen AA (old formula) ALL day

The results...

The twins ate a modest amount first thing this morning. They both pulled the cup away from their mouths and looked at it for a while since it tasted different, but then ate it just the same. Nothing happened – no pain, fussiness, or diarrhea.

They have both been refusing to eat the second and fourth bottle of the day and have gone so far as to push it away or throw it. Today the second and fourth bottles were well received! I felt giddy (truly) when at the bed time feeding Mari saw me pick up her cup and started giggling saying, “ya, ya.”

As of late the typical consumption has been 12 to 16 ounces per day.

Today Mari has already had 15 – and the guaranteed 6 ounces for the “sleep feeding” at 11:00 will bring her to 21 – only 150 calories below her caloric need. I am sure that her little stomach needs a bit of a stretch. She was much less fussy and clingy today too. : )

BabyR actually FINISHED 2 of his bottles today! At bedtime he was up to 25 ounces and his sleep feeding will get him another 6 at least – bringing him to 31…still not where he needs to be for caloric intake, but getting there. He’ll be finishing all his bottles by the end of the week at this pace!

Today was a good day. Watching my children “eat” made me want to cry. It reminded me of the amazing gift it is to nurture and nourish my family.

Thank you for wisdom God.

Tonight I cooked dinner…and I enjoyed doing it.

This Is The Main Point

Yesterday I heard from CHOP. They were calling to “offer me a second opinion.” Woo hoo! The only problem is that the appointment they gave us is October 19th. That is NINE weeks away. It was very nice of them to give us two appointments on the same day – back to back, but they don’t know me. They don’t know that I am willing to drive as far as it takes, as often as it takes, for as long as it takes.

Since we are not existing patients at CHOP there is no way for me to speak directly with the doctors to advocate for the twins. This is not ideal. I have never been great getting past the “gate keepers.” Having been in the sales business for a long time I am keenly aware that this is not my strong point. I pleaded with the scheduler to speak to the doctors again and tell them that I don’t need a same day appointment for both children, and that I am worried about letting the current GI doctor do a scope on BabyM given his lack of knowledge on their condition. She was very nice and told me she would email the doctors back and get back to me. She actually called me a couple of hours later. When I noticed the caller ID I was a bit disappointed because it almost seemed too quick. Apparently the doctors wanted to know when BabyM’s scope was scheduled for. I am still waiting to hear back.

In the mean time I spoke with another FPIES mommy and asked if she had any advice. I called the Eosiniphillic Clinic at CHOP and got some insight into how the clinic works. They told me that unless there is a confirmed EGID they will not see the patient. The good news is that the same doctors are the ones who see FPIES children; they just have to be set up as multiple appointments rather than in the clinic. The director of the clinic also told me that allergy is the driving force behind FPIES diagnosis and treatment. WHAT!? This makes me so frustrated with our Dr. Fancy Pants (GI doctor). He has never referred us to an allergist. I took them to an allergist once to look into IgE mediated allergies, but while I liked the doctor, she really didn’t know much to anything about FPIES (although FPIES was her impression). She handed me a medical study about the condition (which I already had) and sent us on our way. She did want to see the babies in a month to see how many foods they were on, but since they failed each trial I canceled the appointment. I am not sure now whether to be mad at myself or just frustrated. Maybe if I had kept going to see her SHE would have referred me to an FPIES literate allergist.

What to do from here… I am not sure. I know I cannot go back to the first allergist – she is no expert in the condition. I hesitate to switch to CHOP allergy since the twins NEED to see a GI just as bad. Perhaps I will get the ball rolling with CHOP allergy and CHOP GI.

Wisdom – I need wisdom.

Yesterday after the CHOP scheduler called me back about the date of BabyM’s scopes I sent out an email to some very amazing people. I have been sending prayer requests and updates to these people for almost a year and a half and I have no doubt that their prayers have made a difference. We have two children who before we have ever known what is wrong – have been getting the appropriate treatments. All along the way God has opened every door and provided for their every need. Sometimes it is difficult to remember that – but when I come to the end of myself God renews my strength. He has been doing that for a year and a half as well.

Today the story of Jesus calming the storm came into my mind. I was just walking up the stairs and a simple line came into my mind. “It was the main point.” Years ago I did a devotion with Sim, an amazing woman of God, where she focused on the fact that Jesus was sleeping. She repeatedly stated, “This was the main point – not the side point – Jesus was sleeping!” Often times we read this story in Matthew 8 and marvel (like the apostles did) that with just a word from Jesus the storm stopped raging.

The men were amazed and asked, "What kind of man is this? Even the winds and the waves obey him!"

What Sim was saying though is so important – and the Lord brought it to my recall today for a reason. Jesus was sleeping in the boat. He was not worried, he was not afraid, he was not scurrying around trying to save the boat, he was not even praying like he often did. He was sleeping. Like Sim said – this was the main point.

Today I am thinking of the twins and I know that Jesus is sleeping. He has it all under control. With one word he will speak things into motion.

“You will soon see the light at the end of the tunnel”

The Latest Food Failure

With BabyM already diagnosed failure to thrive and now starting lose weight, we decided – with the ok from our favorite doctor – to trial a nutrient rich food. While Dr. Sullivan wanted us to trial a previously failed food, I took it as a “sign” that Wegmans didn’t have any organic sweet potatoes on the three different days that I went. We decided to go with Avocado.

Yesterday’s avocado trial was very funny. BabyR spit out the little cubes each time either he or I put one in his mouth. BabyM was more daring and ate a good bit. I finally mashed it up and had to sprinkle “pow-pow” (formula) over the top to get BabyR to give it a go.

BabyM started with hiccups before she even finished…not a good sign. After a few hours BabyR became clingy and fussy. Both BabyM and BabyR seemed to lose their appetite for the rest of the day. I took note knowing that only time would tell. This morning BabyR passed a stool that was unremarkable for the most part but still it did looked consistent with what we see when a food is leading to a reaction – we’ll have to give him a second portion and watch. BabyM on the other hand gave us quite a bit of information. The problem with the information is that I have only seen this with her once and it is not a “typical” reaction. She passed a stool spotted with small white “curds” – most likely malabsorbed fat. What this means I have NO idea. I am hoping some of the other FPIES mommies can offer some insight as to whether they have seen the same thing in their children.

With the GI doc on vacation until next week we’ll have to wait to get “expert” medical feedback. It is not as though his advice has been on target. Honestly I find the idea of consulting with him unnerving at this point since he treats me like some crazy diagnosis hunter. The funny thing is I AM looking for a specific diagnosis and I won’t stop until I get it…THE RIGHT ONE!

Taking this latest food failure into account I am tired. I spend hours researching –trying to find direction, ideas, and answers. I hope we can get into CHOP soon.

I am in need of God’s peace on days like these.

“You will soon see the light at the end of the tunnel.”

Jehovah Shalom

Waiting...Not So Patiently

The Children’s Hospital of Philadelphia (CHOP) has a clinic that specializes in eosiniphillic disorders. These disorders are encompassed in the acronym EGID. We still need to ruled out an EGID for BabyM and BabyR, but either way the doctors at CHOP will be able to help. It will be amazing to be able to speak to a doctor that knows about FPIES. I can’t imagine I will have to advocate at the same level with doctors who know what they are talking about. I am sure I will still have to be informed and involved, but I am hopeful that this experience with the medical community will be totally different than the entire year and a half of BabyM and BabyR’s lives.

The intake process with CHOP is complete, but because the twins have been seen by a GI doctor in the past the appointment is classified as a "second opinion." That being the case, the medical team has to review their past medical records to even be able to give us an appointment. Until the records are reviewed they can’t even give me an estimate of how long it will take. Meanwhile BabyM has her scopes scheduled for September 10th (Good old Dr. D. has still not called me back about BabyR's scopes AND he went on vacation!) I am just praying that we can get into CHOP before BabyM's scopes so that the real specialists can take care of it. I know they won’t be able to scope her by then, but I am somewhat nervous that Dr. D. could miss something since he doesn’t seem to know too much about FPIES.

So, I am still waiting…not so patiently.

The Princess and the Pea...nut

Oh the life of an FPIES mom. Believe it or not it feels a little strange having to ask people if you can vacuum their floor whenever you go to their house. I guess it wouldn’t be so strange if you were just trying to help out with their housework, but when your motivation is to make sure there are no crumbs of food hanging around – it almost seems like your spewing insults at them.
Yesterday we were next door at my brother’s house before heading out with his family. As usual we spent most of the short time there chasing after my little scavengers as they prowled around for little things to eat. Sure enough they both managed to find some tiny crumb to put in their mouths.

Our practice is so ask them to take it out, sweep the mouth, and offer some ice chips or a pacifier. Unless of course they have managed to chew it up and have surely already ingested some – then we let them enjoy themselves and keep our eyes open for a reaction. So far – 100% - we always get one.

Well the little man found what we thought was a Cherio and was munching away. I tried to sweep his mouth with no luck – this was a lock-jaw scenario! So off we went on our outing. Fifteen minutes later while walking around the college I realized that this little guy was still chewing on something. Shawn, Bethany and I all tried to get him to open his mouth – there was no way a Cherio would last that long without being total mush. Finally we were able to sweep his mouth to find…little bits of a honey roasted peanut. The little bits were all that was left!

Yikes! As you can imagine we were nervous about an immediate anaphylaxis (IgE) reaction - even though the twins don’t really have any IgE mediated allergies – BabyM is classically allergic to soy and BabyR to dust mites but that’s about it as far as we know. Still, we watched and waited for a little while. Thank God nothing happened. Well – nothing happened immediately.

After having gone to bed at 7:30 BabyR woke up screaming around 10:00. He was sitting up, holding onto one ear and was inconsolable. We checked his temperature which was a bit elevated and decided to give him some Tylenol. Alll I could think was “oh great not another ear infection.” This morning BabyR woke up early and fussed until I went in to get him – absolutely nothing unusual there. BabyM and I spent the morning with a fussy boy who had no interest in eating and who still had a low grade fever.

Just before nap time he decided to tell me exactly what was going on. For the first time since his last bit of goat cheese a week or so ago, BabyR had a stool marked with a good bit of mucous.

Ok – no infection, just another positive FPIES reaction. I have never noted fever as a food ingestion symptom before, but after a quick google search and reading one of the medical studies – there it was. I guess this is probably one of the more extreme reactions so far – at least in terms of how quickly we saw the reaction.

I guess perhaps it goes without saying, but I’ll say it just the same – don’t be offended if I ask to vacuum your floor!

The Battle Rages On, But...

I am thanking God for leading us in this rollercoaster journey.

Long ago, the twins started out at a large pediatrician’s office where they were until around six months old. Although I had to hold her hand through much of BabyM and BabyR’s initial GI difficulties in life – I liked our doctor quite a lot. Early on the office refused to accommodate the alternate vaccine schedule we wanted to do (in particular because we feared complicating the twin’s issues with loads of different vaccines). They did not refuse to keep the twins on as patients, but they sent us to the PA Vaccine Clinic since they would administer which ever vaccines you requested. I filled out the paperwork at the vaccine clinic INCLUDING the questions about allergies. They were so intimidated by the allergy issues that they refused to give ANY vaccines to the kids and insisted that the shots needed to be given with supervision of a doctor (the clinic was run by nurses) just in case there were complications.

Right there in the clinic I called the pediatricians office, explained the situation, and pleaded with them to make an exception on their vaccine rule. They refused. As I was leaving the clinic, one of the women behind the desk mentioned that she might know of a doctor who would do an alternate schedule. She gave me a name and phone number which I slipped into the vaccine book that I had brought with me.

When I called the doctor’s office they told me that they did not offer vaccines at all. The receptionist told me that it was probably because as a family practice they didn’t see many children. I slipped the little piece of paper back in the book and kept looking for a pediatrician that could help us. We did find one. He turned out to be a vaccine advocate and planned on bullying me into doing things the “right way.” Each time I gave in to him I left the office terrified that I had made the wrong decision and upset that he had pushed me into something that my husband and I had put a lot of thought and research into.

Juxtaposed to the children’s health there was mine. I was being referred to specialist after specialist and no one could tell me what was wrong with me – well according to them it was all in my head. One day I was doing some research and I came across a specialty called environmental medicine. This sounded like EXACTLY what kind of doctor I needed to see! I searched for one in the area and found one. Yup, ONE. His name was John Sullivan. It wasn’t until I called his office that I realized he was the same doctor I had been referred to by the vaccine clinic. Interesting.

Well this is really about BabyM and BabyR so I will fast forward past all of my own health issues that “Doc” addressed and skip to the point. In November the twins saw Dr. Sullivan for the first time. He was the first doctor who listened, who didn’t think I was overreacting, who agreed that they were suffering from Leaky Gut (something most doctors don’t believe in – even though there are medical studies proving it exists – well they call it something much more sophisticated and swear that it is only a factor in – well who knows what kind of cases). Doc insisted that if we didn’t first heal the gut they would react to every food under the sun. And so the work began.

We have now worked with Dr. Sullivan for 10 months. He is the only doctor in babyM and BabyR’s lives who I trust and respect. And even when he doesn't automatically know the answer he's willing to go deeper. He never makes me feel like my research is useless and he's the one with all the answers. 

Today I am thanking God for leading us to Doc. As it turns out there was one other time that we were pointed to Dr. Sullivan – all three instances came from completely different sources. I love those little “coincidences.” What’s more God opened the door for the twins to receive a very expensive “alternative” treatment that no other doctors around even know about.

Today Dr. Sullivan and I checked in regarding this treatment.

We think it is working. We think it may be the reason that BabyM and BabyR’s condition has flared up now – since the treatment must be repeated every two months (and BabyM and BabyR had to skip their last treatment due to strep throat). There is no way for us to be sure just yet since they won’t have another treatment until after the colonoscopy/endoscopy. We have to watch and wait (my favorite thing).

I have still not heard from Mr. White Coat about BabyR’s scopes so the battle rages on. Even still, today I am grateful for Dr. Sullivan!

This Is Hard.

When does it ever end? When will these medical issues become medical issues instead of one great big fight?

Twenty days ago I get some indication that Dr. D. – Mr. Pediatric Gastroenterologist – was “getting it.” Well, it is not as though my vigorous advocating is what convinced him. No, it was the blood that he saw for himself in BabyR’s stool. At the time of the appointment BabyR was the one with the more severe symptoms – at least in visible and quantitative terms. For this reason Dr. D. was adamant that when the time came to order the colonoscopy and the endoscopy we would surely have to order BabyRB’s procedures first. I agreed that this was fine since we would still be ordering BabyM’s soon after.

Well? The time is here. The testing for bacterial infections, metabolic issues, parasitic infections… all normal. Naturally when I got the results of these tests I left a message with the scheduler to see about scheduling the procedures. Nothing. Day two called back…left a message. When she returned my call she was confused – asking, “what procedures? I did send an email to Dr. D. when you I got your message yesterday but I haven’t heard anything.” Day three – nothing.

In the mean time my poor little girl is vomiting (for no apparent reason), refusing to eat, and yup…losing weight. One would think that upon hearing this Dr. D. would be moved to action. Wrong again. He was given this news on day two. I know things take time, but we are talking about a child who is already below the charts for her weight – which by the way “concerns” him. Today, day four, I called back and this time left a message for Dr. D.’s nurse.

I CANNOT BELIEVE the nature of the call I received:

Nurse R: Hi this is R. from Dr. D’s office.

Me: Hi how are you?

Nurse R: I’m good. Ok, so Dr. D. is going to order the scopes for BabyM. (Interesting inflection – as though he just decided this)

Me: Ok good. I know that will be a few weeks out for scheduling; did he say anything about what to do as far as her losing weight in the mean time?

Nurse R: No, just keep doing your best to get her to eat.

Me: Ok, thanks. Oh, wait what about BabyR’s tests? I know we weren’t going to do them at the same time, but is he going to schedule him too?

Nurse R: No, he just said we’re going to do BabyM at this point.

Me: We were –

Nurse R: (Interrupting) I just asked him that before I called and –

Me: (Interrupting) I’m going to need him to call me then.

ARE YOU KIDDING ME???

MR. White Coat and I had already agreed upon a course of treatment. If the tests all came back normal – i.e. there was no infection to explain away the twin’s (LIFE-LONG) symptoms – it was TIME to get a look at what is going on in their GI tract. Am I going crazy? Just a few weeks ago it was IMPERATIVE (according to Mr. White Coat) that BabyR have the procedures first.

What is perhaps even more frustrating than this game of white coat and patient (cat and mouse), is that all along the way in the course of BabyM and BabyR’s treatment the doctors have wanted to do medical tests on ONE of them – as opposed to both – and then interpret the results and plan a course of treatment for them BOTH. I have had to remind DOCTORS that these are TWO DIFFERENT PATIENTS. This seems nuts to me. If I didn’t have insurance and was asking them to run tests on one of them but to treat them both – they would tell me NO WAY!

So now I sit and I wait for Dr. D. to call me back. I have prayed for wisdom and I trust that by then I will be calm enough to actually speak to him without “letting him have it” – that never gets you ANYWHERE with these doctors anyway. I find that stroking the ego and allowing them to think that things are their idea works much better – sometimes I even play dumb with them. They love that…they really seem to feed off it.

It is not that I think all doctors are this way. I actually respect those doctors who don’t treat me like some kind of hyper vigilant parent looking for a medical diagnosis… just for kicks or attention. It may seem unbelievable to some, but this is the life of most (if not all) of the parents I have talked to who have FPIES babies.

This is hard. In this fight I am sustained only by faith and grace.

Jehovah Shammah. Jehovah Nissi. Jehovah Rapha. El Elyon.

Doing What Is Best For THEM

Advocating for your child in the world makes perfect sense. We do it every day. We advocate for our children in daycare, school, sports, the medical world and plenty of other places. As much as people out in the world may like your child or even care about them, it’s not their job to take care of things and to be sure your child gets ALL that they need.

I am fine with this. It really doesn’t faze me. I am used to it, and I am good at it.

What I am not ok with and what I am not so “good at” (read tactful at) is advocating for my children within my family. I may find it mildly frustrating when interacting with friends or acquaintances who don’t really “get it,” but when I have to advocate for my children within their own family I find it downright offensive.

No, I don’t expect anyone else (not even family) to have done the research – the countless hours spent reading medical journals and having to research the research just to grasp what it is saying. What I can’t seem to understand though is being treated by my own family the way the doctors treat me – like a hyper-vigilant, hypochondriac, who just needs to let go of control. Oh how I wish it were that simple. How I wish I could just give them food and it would all be ok.
No. This is not so simple.

BabyM and BabyR have something called Food Protein Induced Enterocolitis Syndrome (FPIES). No I am not making that up. This is ONE of their diagnoses. What does it mean? Who knows what it means. No one knows what causes FPIES. It could be very bad – or they could grow out of it. What is the worst case scenario with this FPIES? Well there are those kids who eat a food – react to it – go into shock – AND DIE. That is possible with FPIES. No it is not common, but it does happen. If death is the worst case scenario one can only TRY to imagine what the more common symptoms of the disease are.

One phase of the waiting is over. All the blood and stool tests came back normal. Now phase two of waiting begins. We schedule scopes for them both – endoscopy and colonoscopy. – and then we wait some more for the results.

Crohn’s Disease? Inflammatory Bowel Disease? Eosiniphillic Gastroenteritis? Ulcerative Colitis? No definitive findings?

I know God is in control of this. I know HE is the great healer. I just ask for those who don’t understand to ask questions or simply trust that we have done (and continue to do) for our children what they needed us to.

The Trick - Cease Striving

It is becoming more and more evident that we are at a turning point in this journey.

About ten days ago we took the twins to their GI specialist. In preparation for the appointment I had decided that I was done. Finished. I decided that I could not – would not – leave Dr. D.’s office without him ordering more tests. After the first update and exam I could sense that he was about to give me the thumbs up – we’ll see ya next time… So I started advocating right then and there. He fought me – treated me like I was an overdramatic hypochondriac, but I kept on. He got half way through the second exam and thanks to the terrible GI disturbances going on with the twins – he had the opportunity to test BabyR’s stool for blood. He left the room with the test and returned a few minutes later – singing an entirely different tune. He ordered ALL the appropriate tests. A bunch of viles of blood and 4 stool samples later (2 for each) we sit and wait.

Infection = Treatment then Colonoscopy and Endoscopy

No Infection = Colonoscopy and Endoscopy.

I have been fighting for these tests for about a year. They are the only way we can rule out some of the “worst case scenarios” – or rule them in.

But this is not really where the road makes it’s bend. It is in the journey of faith that I see the crossroad. As a mom with sick children I see it as my job to research, learn, advocate, fight, and keep on going. Perhaps I rely on my own abilities too much at times. There are certainly times when I try well beyond my power and strength and finally fall at the feet of the cross – exhausted.

I found myself here in this moment – trying to “be still.” This message had been laid on my heart and then directly confirmed through one of those little “coincidences.” When I looked deeper into this scripture in Psalm 46, I discovered that there is a subtlety to the term “be still” that implies a direction to “cease striving.” Here I am fighting against everything in my flesh that tells me to keep going, researching, advocating, trying to find THE answer…waiting on Him.

“Cease striving and know that I am God…” Psalm 46:10

It's Time To Write

Wow. Where to begin...

For three years I have been a CASA - short for Court Appointed Special Advocate. I advocate for children who have no voice because they are caught up in the foster care system. I am told I am good at this job. In truth I have been an advocate all of my life – long before I was a CASA.

Today I am a mother – a child of God, a wife, and then a mother. My two children are almost one and a half years old. They have been sick all their lives; although by the grace of God it would be hard to see it if one did not already know. They began their short lives in constant pain, and still experience it frequently. They are repeatedly coming down with the latest viruses to hit the region. They cannot eat food. Literally, they drink a medical food as their “sole source of nutrition” – of how important those exact words have been in our journey.

It is time to write.

I struggle to keep it all straight after so much time and so many doctors. Each one telling me that they are fine. “It’s probably just a virus.” We were told this by their pediatrician at six weeks old as they passed mucus and blood filled stools (which had been getting increasingly worse since birth), and developed matching diaper rashes of open seething ulcers. Are you kidding me? A virus? We had been in the doctor’s office at least twice a week at that point dealing with this.

Every spare moment I had (which was not a lot with two new babies AND my own debilitating illness) I spent researching their symptoms. A few days before the “just a virus” comment, I stumbled across an infant formula that was literally IMPOSSIBLE to be allergic to. There was no clear test telling me that they were allergic to milk or soy, but we had tried all of the formulas in the store – all of them. When I asked the doctor about this liquid gold called Neocate she said; “that’s really expensive.” Again, are you kidding me!? For all she knew I was a multi-millionaire. She hadn’t even mentioned that this stuff existed.

$43 and 24 hours. That was all it took. The rash was gone. The babies whom I had spend 16 hours a day trying to feed just so they would get enough calories to grow, suddenly wanted to eat.

This is only the beginning of the story of my battle with the medical world. It is sometimes difficult for me to remember all the details unless I sit down and think about it, and I don’t want to forget. I feel that we are at a crossroads in this battle. My countless hours of research, my own battle with health and the medical world and faith have me believing that we are on to something – that we finally may have figured it all out. Maybe someday I will write the rest of the story that precedes this entry, but for now, I can’t imagine losing the details of what God is about to do.

We are at a crossroads, and it is time to write.