Today Was Different

Today was a long, but good day.

I woke up late – thanks to the little ones who let me sleep in this morning! That being the case, every moment between waking up and getting out the door was spent preparing food, diaper bags, nap gear for LittleR and an entertainment bag for LittleM. Somehow we managed to get out the door on time to drop LittleR off at his aunt’s house for the day.

LittleM and I started off on our journey 2 hours away to Drexel Hill, PA (just outside Philly). In my usual manner we showed up about 20 minutes early…oh wait…I am never early – this was a good start!

LittleM has no idea that we were going to see a doctor for her tongue. Usually I prep her for appointment so that she knows what to expect, but the last appointment was so awful that I decided not to let the anxiety build. I didn’t tell her until we were walking back to the exam room. She was not all that impressed, but seemed to breathe easy when I told her that I would go first. “Just like Dr. B.” she said.

**Yesterday, LittleM was adjusted for the first time by our favorite chiropractor, Dr. B….just like mommy!**

About a week ago LittleM saw an ENT to help us figure out why she can’t swallow. Her OT wanted us to rule out a tongue tie. The ENT was very nice, but expected this 2.5 year old to behave like a 25 year old, and when that didn’t work out he just decided he was going to use a tongue depressor an assistant (to hold LittleM down) and look in her mouth whether she liked it or not. When he put his finger in her mouth to feel under her tongue she BIT HIM! GOOD GIRL! Is it really any wonder that he didn’t feel anything!!!??? Although he said there was no tongue tie I certainly didn’t feel confident that we had truly ruled it out.

Six weeks ago LittleM say a maxiofacial surgeon. Even worse…he didn’t even try to feel in her mouth. He didn’t even LOOK in her mouth. Still, he was somehow able to rule out a tongue tie. Ok this was just a colossal waste of our time – and LittleM’s medical patience.

BUT TODAY…Today was different. Dr. Penny Soppas is well known for her work with tongue tie. She is a pediatrician and a lactation consultant. Upon researching tongue tie her name came up in more than one place. It seems that people drive much greater distances than we did for her expertise. The only drawback I could see is that she most often sees and treats infants who are having difficulties feeding and nursing. Well I guess in hindsight we should have been in to see her a LONG time ago.

The Appointment:

Dr. Soppas was patient with LittleM. She gently followed my lead when I told LittleM that mommy would go first. She allowed me to talk LittleM through each step, and didn’t try to force LittleM to cooperate. She didn’t try to act like she had all the answers.

The Verdict:

Yup, I liked her. Dr. S. (as LittleM called her) said that she couldn’t rule out a tongue tie. She told me that she wanted to bring LittleM.’s case to a “council” of tongue tie professionals and brainstorm on where to go next. She talked about a couple of other doctors who we may want to see, but never dismissed us. This was a good day.

The Hope:

For the first time since we started this quest to rule-out a tongue tie, I feel hopeful. I feel like we have someone working alongside us who knows where to go and what to do next. We have had the proverbial door slammed in our faces on this one for a few months and this is progress.

The Follow-up:

This evening after a very long trip home and a very long night trying to get two wired kids to bed I settled in and checked my email:

Hi Mrs G,

The more I think about [LittleM.’s] swallowing dysfunction the more I think that posterior tongue-tie is a major factor. I'm sorry I was not able to view or copy your videos today. I was thinking that it might be hard to send those videos if they are large. There is a free program that allows you to send large attachments called "cutesendit" which you can search for and download. I look forward to viewing those videos and consulting with the doctors and therapists in the International Association of Tongue-tie Professionals.

Thank you,

Penny Soppas MD, IBCLC
Drexel Hill Pediatric Associates

Thank you God for your leading stride. I pray that you lead and direct us. Grant us your wisdom and understanding to navigate this next step for LittleM. She is in your hands Father…Jehovah Rapha.

Manna From Heaven...One Day at a Time

I am sitting here tonight in the beginning stages of planning for a two week trip to Maine. Yikes. The juicer, the Vitamix, soy free eggs, grass fed ghee, raw sauerkraut juice, soy free chicken (heads and feet too!), grass fed meat, bones, organic apples, the list goes on and on.


How am I going to fit this all in a little Saturn Ion?

This is not even to begin planning for our clothes and personal items.

I repeat…YIKES.

What a different place we are in though right? A year ago at this point in time LittleM and LittleR had ZERO foods. That’s right none. They had been getting goat cheese, but after the summer trip to Maine we had to pull it since they began reacting to it. In hindsight we realized that they may not have been reacting, but may have been experiencing die-off from the goat yogurt we has started giving them in Maine.

In any event, we pulled it and they were left with no foods. It wasn’t until late September (2010) that carrots came on the scene, but today – 2011…today we have about 27 foods. TWENTY-SEVEN FOODS!!!!!!!

Thanks to the unmistakable leading of the Lord, we have been introduced to the GAPS protocol. Thanks to this protocol and the grace of God the kids are experiencing healing and are eating! Each time I have become impatient and veered off of the prescribed protocol they have reacted, but as long as we have followed the protocol – they are well – no reaction and eating lots of food! This brings me to the belief that God has impressed upon my heart. As we step out in faith and take each next step of this protocol He has brought to us – HE will prepare the way…one step in front of us. HE will make their little bodies ready. AND HE HAS. In my impatience I have tested this theory, and each time I have seen it to be true. There are times when taking one of these steps in faith has seemed impossible - too scary, but in faith we have taken moved forward through the fear. There have been other times when waiting seems impossible and I have gotten ahead of myself (feeding them raisins even though it is not time). As I realized my misstep and corrected our path, healing and peace has continued to come to their bodies.

Honestly I feel like I am gathering manna from heaven – just enough for the day. If I gather too much – trying to store up what we need – do this in my own strength – it just spoils. For whatever reason, the Lord has us leaning on him daily, and not just for the normal things like faith, grace, love, wisdom, understanding, but the normal everyday thingslike feeding our children. This really is like the manna, isn’t it?

Lord,

Help me to rely on you every day. Help me to give LittleM and LittleR over to you each day. I know that you loved them even before I did (Psalm 139:13).

I know that you have their best interest in your heart (Isaiah 41:10, 13). I know that you have I given them to me as a reward (Psalm 127:3). I know that you have a future and a hope for them (Jeremiah 29:11). I know that things are not always going to be the way I think they should be or the way I want them to be and yet you are still in control (Proverbs 3:5-6). Give me the courage, strength (Philippians 4:13) and faith (Hebrews 12:2) to lay it all at your feet just the same (1 Peter 5:7). Help me to walk in faith (Mark 9:24) and obedience following your prompting (John 14:16-17) to wait (Psalm 27:14) and act (Proverbs 2:6) in the season (Ecclesiastes 3:1) that you appoint. Thank you, that you are not a far-off and distant God (Hebrews 4:16). Thank you, that as I call on you and seek your face with all of my heart, YOU WILL BE FOUND BY ME (Jeremiah 29:13).

Amen.

***Now to pack the car. Ha ha!***

LittleM Will One Day Have Her Cookies

“God’s gonna heal your belly and then you can have cookies.”

This has been LittleM’s favorite saying lately. Since being able to eat more foods we have allowed the kids to be exposed more “normal” foods and meals – mostly at my brother’s house. They are especially intrigued by the foods they often see their cousin LittleK eat since he is only a few weeks younger than they are. Interestingly, they are pretty good about not being able to have the same foods as the other kids. They may ask for them from time to time and LittleM may try to eat scraps and crumbs that she hunts down on the floor, but other than that they are willing to accept that their “bellies need to heal” before they can have many foods they see.

At this point we are experiencing out first food fail since starting the GAPS protocol. We add so many foods at a time that I am not even positive which food we are failing. It could be beets, spinach, apple juice, or raisins. Honestly as I am sitting here writing there is this little nagging feeling in my gut as I am reminded of what I know God has told me in this. I am certain that God has brought us into the light at the end of this tunnel, but I am also certain that He has us following the GAPS protocol. I have “heard” Him tell me that He will go one step ahead of us in this and prepare the way. The feeling that has gone along with that is that we are to obedient and stick to the protocol. So what is outside the protocol?

Raisins. I gave them raisins in a moment of weakness – just wanting to give my children something normal and tasty to snack on. And they LOVED them. They began asking for them all the time. So what’s the big deal? Raisins are on the full GAPS diet, but at this point in the protocol they may just be too much for the intestines to handle.

I feel pretty silly as I am writing this now. We have to give them raw egg yolk – because if we cook it – it is too difficult to digest. We have to give them the juice of certain vegetables and apples – because if they eat the whole fruit – it will be too difficult to digest. We are only allowed to give them boiled foods – because if they eat them raw or cooked by other methods – they will be too difficult to digest.

Well, I certainly feel like I have come up with the answer I have been seeking. I am guessing that the raisins have compromised the intestines and interrupted the cycle of digestion and ultimately I am not sure how much damage has been done – has this caused a reaction to one of the new foods? I am not certain. I am however certain that the raisins are out…for now.

Sometimes it is just so hard to deny your children SO much. I am so grateful for all that they are able to eat now. I have said for so long that if they could only ever eat 10 foods we could deal with that. It was just always the not knowing that was too much. Well, here we are today and we have passed the 10 food mark. This is a good thing!

I KNOW that God is faithful and that He will be true to his word. I know that as we follow the protocol He will prepare their bodies – and on the other side – there will be a complete healing.

I know LittleM will one day have her cookies.

Last year at this time we had a problem. LittleM would put everything in her mouth. Even though we were past that stage in age, we were not past the stage in actuality. I always suspected that this had something to do with her innate desire to put things in her mouth and chew – to eat. While other parents of the twin’s age were talking about strategies to get rid of the pacifier that was not even on the radar for us.

The papu (as LittleM named it) was a soothing mechanism, and an added layer of protection from eliciting an FPIES reaction to God only knows what the twins might put in their mouths. For me it was more than that though. For me the papu has been one thing that I don’t have to deny them. Imagine the emotional tie I have had to it since it has been one of the only things that I could LET them put into their mouths. It has gone right in line with my theory that while dads are created to provide and protect, moms are made to nurture and nourish. In a strange way the papu has met both of these desires in me, but it was not until today that I could put that into words.

Over that last few weeks Shawn and I have been talking about the need to get rid of the papus. It certainly makes it easier to think about since the kids have a dozen or so foods that they can eat. This is not the main reason we are pushing forward with the task though. Cute as it may be both LittleM and LittleR have developed papu-speech. At one point LittleR actually developed a lateral list. Put your thumb on the roof of your mouth and say “church.” Yup that is how he sounded – only worse. Although out OT told us that there was no way to work on this until three years old we began working with LittleR and the lisp is pretty much gone. In the last week or so LittleR started saying things like, “look, I see a big, big twuck!” While LittleM spits out the same “r” sound; “let me twy it.”

Yikes. Time to make a change.

Today I was out for groceries with the twins. As we pulled out of Wegman’s, I decided to make a stop at the thrift store across the street. I made a passing request to the Lord as I parked the car; “Ok Lord, you know we need to get this done.” I went inside and made my way to the back of the store to sift through the children’s books. Right there on the top of the bin was a copy of Little Bunny’s Pacifier Plan in great condition. Wow. This was a long shot really – such a specific type of book and there it was. I flipped through the pages and quickly discerned that the “plan” was for Little Bunny to give his pacifier to a new baby. I was not real thrilled with this “cold turkey” approach and dug through every last book in the bin in search of a better plan. Who wants to deal with the fallout from taking twin 2-year-old’s pacifiers away in one fail swoop? I sure don’t, but more than that, I didn’t want to put them through that. I know that my emotional ties to food and their inability to eat like other kids is stronger than theirs, but I also know that I have no idea what is going on in their little minds. I have no idea how one is related to the other – for them.


Still, I said, “ok God.” I bought the book. Before nap time I began telling the kids that we were going to give their papus to a new baby soon. They seemed ok with the idea though they obviously have no idea what that would mean for them. We all sat down on the couch to read the new book. I figured there was no reason to hold off the indoctrination of the papu plan. As I read the book to the kids my eyes welled up with tears. I let out a quiet laugh – just between me and God. He never ceases to amaze me. I am always so surprised at how he cares for even the little things.

The Papu Plan
Step One: My little bunnies can only have their papus inside house
Step Two: My little bunnies can only have their papus in their bedrooms
Step Three: My Little bunnies can only have their papus on the papu chair (in their bedrooms)
Step Four: My little bunnies pack their papus away in their closets
Step Five: LittleM and LittleR wrap their papus to give to a new baby as a present

And he is jealous for me, loves like a hurricane, I am a tree
Bending beneath the weight of His wind and mercy
When all of a sudden I am unaware of these afflictions
Eclipsed by glory and I realize just how beautiful You are
And how great Your affections are for me

And oh, how He loves us, oh
Oh, how He loves us, how He loves us all.

John Mark McMillan

The New Plan

There has been a new turn of event in our little house. After some thoughtful deliberations we have decided to begin family dinners. Shawn and I discussed the “sacrifice” of a fairly boring diet as it complements our desire and ability to begin eating meals together as a family (while still limiting LittleM and LittleR’s exposure to foods that they cannot have). Honestly as we thought about what our menu would look like; it became clear that this was a “no-brainer.”

Up until now we have made sure that the kids ONLY consume grass-fed meats (they have reacted to soy-fed poultry; corn fed poultry is questionable), but as for Shawn and I all bets-were-off. We generally eat grass-fed beef, but everything else has been conventional due to the increased costs of quality meat.

Over the past couple of months that the kids have been able to eat multiple foods, we have cooked them dinner in the evening. I would pull meat off of the bone in their bone broth and then boil a 2 or 3 vegetable to go with it. Then I would have to cook dinner for Shawn and me once the kids were in bed. Many night we wouldn’t eat until 9pm. When I talk about not having time to get things done I have not been kidding. After cooking and eating dinner and clean-up we finally finish the night off at or after 10pm. This has been exhausting, but worth it. The relationship the kids have with food is worth it. The fact that they have NO idea they are denied such a large part of a normal life…they have just not felt the sting of this in their short little lives. This has been worth it. But wow – I am tired!

The New Plan:

Tonight will be the 3^rd night of family dinner! WOOOHOOOO! When I say family dinner I am talking about the four of us eating the same thing…well at least to the same extent as any “normal” family. In many families the kids plates don’t look exactly like the adults simply because the kids don’t like certain foods – right?

Well, we will have to cook dinners that are very simple and pure. Shawn and I will still use different sauces and marinades that will not be on the kid’s foods, BUT I am preparing these from scratch with ingredients that are allowed on the protocol that we are doing with them. The idea is that down the road when they are allowed to have the ingredients we will be able to build meals that are EXACTLY the same. There are certain things that I will continue to cook for Shawn and I that the kids cannot have, but we will limit their exposure to these foods in simple ways – like positioning the plate with these foods out of sight or reach. I am not worried about them seeing these foods – to the contrary – I think seeing other pure foods that they may be able to have in the future is good for them. My goal is really for us to be eating very similar meals – TOGETHER!

Yesterday for the first time EVER LittleM and LittleR were allowed to eat off Mommy and Daddy’s plates. I just really cannot describe the feeling.

Thank you God.

The Food: Theirs/Ours

July 4^th - Day 1

Dippy Meat (meat with pureed carrot “sauce”) / BBQ Chicken

Boiled Zucchini Sticks / Seasoned Grilled Zucchini

Boiled “Cole Slaw” / Honey Raisin Cole Slaw

One bite of lettuce (No harm here they won’t swallow it yet!) / Salad

July 5^th – Day 2

Boiled Garlic & Ginger Salmon / Grilled Garlic & Ginger Salmon

Carrot “Fries” / Sweet Potato Grill Fries

Boiled Broccoli / Boiled Brocolli

Tonight’s Menu

Boiled Mini-Hamburgers / Grilled Hamburgers (no bun)

Boiled Sliced Onions / Fried Onions

Butternut Squash Puree / Honey Grilled Butternut Squash

Boiled Peas / Boiled Peas

The Good, the Bad, and the New Plan

Phew. Time to take a breath since going on vacation! I think it is often the case for any American family, with or without a chronic illness; you really need a vacation to recover from vacation! I feel like we are just coming out of this stage now. We have now been home for 4 days – the bags are unpacked (mostly) and the kids are getting back into the swing of things.



The GOOD

Just a few days before we headed to Maine for 10 days of vacation LittleM headed back to the GI doc for her 3 month follow-up. It was back at the beginning of this year that Dr. D. put both of the twins on “feeding tube watch.” At that time he gave us 4 weeks to make significant weight gain for LitttleM and 6 for LittleR. By the grace of God they both began to make gains far beyond anything the medical world could explain. Well this visit was no different. LittleM is back on the growth charts for the first time in probably TWO (of her almost 2.5) years! PRAISE GOD! I am happy to report that Dr. D. cleared her for six months!!!

The BAD

The bad news is that these kids are growing up. Well that is really not all that bad news is it? No, really it is good, but it presents a whole new bunch of challenges. Just today LittleM was going through her “annual testing” with her OT (early intervention tests yearly to make sure nothing is being missed). She finished her cognitive tests today and scored at 32 months (she is almost 28 months). I can see that this is probably part of the reason we are presented with some of these new challenges. The other is probably the effect from being exposed to her peers eating food while we were on vacation. The result? This little girl is not all that happy that she cannot eat other foods. For the first time in a year she is sneaking food into her mouth (crumbs, groceries while in the store). Just 14 short days ago she would bring it to me. LittleR is affected in a different way since vacation, but still new. He is not really trying to eat things that he should not, but yesterday he melted down when his cousin had a popsicle and he could not have one (his special pops were not ready).

I emailed a couple of PhDs today to chat about the psychological effects of all of this on self-worth. I had done just a little research on this topic after reading an excerpt from a book about living with allergies. At the time we decided that based on what I had read we would not expose the kids to food. It seems to me that at this point – unless we plan to raise them in a bubble – we have to begin the evolution of our plan. We have to prepare and make incremental changes that will allow them to grown. After doing a little more research on personality development I really believe that my “instincts” were really God-given wisdom (which I have prayed for tirelessly in this situation). Not to say that removing exposure to food is the only answer for an FPIES child – some families don’t have this option – and I am sure that God gives wisdom on how to instill self-worth and self-esteem even though they have to be denied food. I have always believed that we are fortunate to have the option to shield LittleM and LittleR in the ways that we have.

The NEW PLAN

Still, we can’t do it forever. We can’t create a world for them that is so far removed from the real world that they don’t know how to function IN the real world. I believe that we need to begin planning for the next step in this journey. What does that next step look like? I have no idea. Time to pray and seek wise council. We can return to normal (VERY little exposure to food) to a certain degree at this point, but they are growing older, and we WILL face this problem again…how can we best prepare them to operate in the world around them and still nurture their spirit and personality.

That is actually the task for every parent isn't it?
Thank God that He gives wisdom to those who earnestly seek it.

Proverbs 2
² Make your ear attentive to wisdom,
Incline your heart to understanding;
³ For if you cry for discernment,
^[a]Lift your voice for understanding;
⁴ If you seek her as silver
And search for her as for hidden treasures;
⁵ Then you will discern the fear of the LORD
And discover the knowledge of God.
⁶ For the LORD gives wisdom;
From His mouth come knowledge and understanding.


Proverbs 3
²¹ My son, let them not ^[g]vanish from your sight;
Keep sound wisdom and discretion,
²² So they will be life to your soul
And adornment to your neck.
²³ Then you will walk in your way securely
And your foot will not stumble.
²⁴ When you lie down, you will not be afraid;
When you lie down, your sleep will be sweet.
²⁵ Do not be afraid of sudden fear
Nor of the ^[h]onslaught of the wicked when it comes;
²⁶ For the LORD will be ^[i]your confidence
And will keep your foot from being caught.

A Beautiful, Timely, Perfect Symphony

It’s funny how sometimes the slightest variation in perspective can really change the way you see things.

For months we have known that our food expenditures were surpassing our food budget, but with the very specific kinds of foods that we have needed to buy, we have not had much of a choice. Thankfully we have always been able to cover the expense one way or another.

Just this week, we realized that beginning next month our car would be paid off and we would have about $115 “extra” per month. Believe it or not, this was actually frustrating to me because, wouldn’t you know, we would have to allocate the extra money (at least in part) to balancing our food budget. I was frustrated because every time without fail that we have had money free-up in our budget there has been something else that swoops right in and gobbles it up. God has been teaching Shawn and me all about relying on him for our finances ever since we have been married. Honestly God has provided for us in some really amazing and creative ways. I am certainly not blind to the fact that he stretches a very meager one income VERY far beyond the economy of this world.

***As an example: We live in a home that we rent from relatives of a relative. This is a 3 bedroom ranch home with a full finished basement, two car garage, rear patio…in a quiet family friendly college town…so how much should this cost??? I would estimate at least $1200 per month. We could NOT afford a rent like this. It is difficult to really imagine how we would afford a large enough rental for the four of us to live comfortably based on the economy of our income. By the grace of God, we pay a fraction of the market price for this rental. This is just ONE example of how God stretches our meager income each and every month.***

Still, yesterday as I was going over the new budget with Shawn, I was frustrated. “Why is it that every time we get ahead with our finances we are still at zero. What is God trying to teach us,” I asked? As Shawn encouraged me that it wouldn’t be like this forever (he finished his bachelors this summer!), a little bit of perspective popped into my head. I realized that our food NEEDS at this point stretch beyond the amount that we have been exceeding our food budget. I realized that my kids are EATING REAL FOOD – that in the months to come we would need to be buying enough food to sustain TWO MORE PEOPLE. Since the “million dollar formula” is covered by our insurance, there would be no money to reallocate to real food once they are done with the formula.

Did I just say that…DONE WITH THE FORMULA????

Suddenly I was in awe of God’s provision for my family once again. Shawn and I talked about how if the car had been paid off earlier (we almost paid it off with last year’s tax return) that money would already have been reallocated to something else. In that moment it was as if we could SEE The Great Conductor’s hand gracefully moving his baton bringing a beautiful, timely, perfect symphony to our ears.

Suddenly we realized that $115 a month will probably feed a couple of 2 year olds on the GAPS protocol perfectly.