I Have to Cook Two Hotdogs

I have to cook 2 hotdogs. So what does that mean you ask? Wow, where to begin.

**Scroll down to Cranio Sacral Facial Therapy to skip the back-story**

I guess I should start with the hotdogs themselves. LittleM and LittleR have been painfully aware of hotdogs for some time. their dad eats them almost daily as a snack to hold him over until our very late night dinner (after the kids have gone to bed), and their cousin LittleK who is their age, and lives next door, eats them all the time too. The kids have wanted hotdogs for ages, and before we started GAPS in March of this year there was no hope that they would be able to have them anytime soon. By the end of the summer we realized that they were experiencing a lot of healing, and so I began looking for a safe hotdog. I couldn’t find anything so I decided to try and make my own with lamb meat. They were a big flop!

While in Maine for my sister’s wedding we decided to try an amazing product that we had been waiting on for some time. Applegate Farms claims to be “changing the meat we eat.” They make a product called the Great Organic Hotdog. Well if you start looking into the big food lie you start to realize that the word organic doesn’t necessarily mean all that much. You learn that organic beef is simply beef from a cow that was fed organic feed. This cow was still fed corn and soy and lots of other things that it was not created to eat. Now LittleM and LittleR have already reacted to trigger foods that were ingested by their meat. BUT there is more. The meat, fat, and healing components of a piece of organic beef are not all that desirable either.

But grassfed beef….ahhhh…that is a whole other story. This GREAT ORGANIC HOTDOG is not just organic, but also made with 100% grass fed and finished beef. The other ingredients in the dog are minimal and worth the challenge.

So, since October, we have had a safe hotdog. THIS IS HUGE. It is amazing to think of how much I took for granted the ease and convenience of cooking and eating before this journey. Having something that I can cook in a matter of minutes for the kids is so great, and they LOVE their hotdogs.

Besides hotdogs being fun, easy, and quick, I had high hopes that they would be a good food to learn to chew and swallow. This was the case for LittleR, though we had to remove the casing for a while since it was difficult to swallow. LittleM was a different story. She couldn’t swallow anything solid really.

Cranio Sacral Facial Therapy

That was until we started cranio sacral facial therapy for her. This was a part of the result of the journey from my last post. We were led into this therapy that helps to release tension in the body – anywhere in the body. Our amazing OT was convinced that we needed to try this therapy in order to release LittleM’s tongue tie before we went ahead with surgery. I can’t say that I thought it was going to work, but I knew that it was my job to follow God’s leading, and this is where he had brought us.

Session 1 – Tuesday

On Thursday my sister-in-law and I stood talking while LittleM was eating lunch. While we stood there LittleM was quietly SWALLOWING her lunch. I didn’t see it. My sister-in-law just asked where the food was. I looked around without saying a word – since I didn’t want to spook her into stopping. Sure enough it was nowhere to be seen and after watching for a little longer, I saw that she was indeed swallowing. She finished her entire plate and asked for another. She ended up eating 2.5 plates of food. At that point a plate of food consisted of one “coin” of hotdog cut into quarters, 1 “coin” of carrot cut into quarters, and 2 tiny pieces of broccoli. Before the therapy session I would struggle to coach her to swallow 1 – 2 bites. After the first session she swallowed more than 20 bites!

Just after she finished eating she told me she had to go to the bathroom. The little girl who is fully potty trained and goes off to hide if she needs to poop (she holds it in for days at a time) was telling me that she needed to poop. I sat her on the potty and within 10 seconds she went. THIS IS AMAZING. This has NEVER happened. This girl has been so constipated for her whole life (unless in an FPIES reaction with diahrrea) that pooping would sometimes take more than an hour.

This makes sense because as the OT was working on LittleM she discovered a “knot” in her abdomen – above her belly button just to the left. I had felt this knot many times, but didn’t know what it was or what to do about it.

Session 2 – Wednesday (the following week)

Pooping has been ok – not as amazing as that first session, but much better.

Swallowing has continued to improve daily.

UNTIL TODAY…

Today I had to cook 2 hotdogs.

There was no need to cook 2 before today. LittleR would easily eat a whole one, but LittleM only needed 2 very thin slices cut into quarters – that was all she could swallow – even after 2 sessions of the CSF therapy. BUT TODAY this kid just kept going. She kept swallowing and telling me that she needed more. She swallowed a half of a hotdog and lots of veggies! It was so funny watching her fuss with the waist band of her pants as her tummy kept expanding as she continued swallowing! This is still hard work for her – it took her over an hour to eat it all. BUT PRAISE GOD!

LittleM just chewed and swallowed and became FULL with her FIRST age appropriate meal!

This therapy is truly amazing.

PEACE THAT SURPASSES UNDERSTANDING

During this journey there has been one lesson I have learned loud and clear. It is not that I got an A on the first test – nope – not even close. I failed the first test miserably. Even after roping in a failing grade, I kept right on going trying desperately to make 1 + 1 = 3. Eventually though, I realized that I was looking to the wrong source for the answers to the equation. I was relying on my own wisdom, my own research, and my own efforts and power to figure out what to do next for LittleM and LittleR. At one point I decided to heed the message that had been coming to me again and again… “be still.”

Who me? Yikes. I am a get it done type of person. My signature tag line on any cover letter I send out boasts my “just get it done work ethic.” I thrive during crunch time when many simply panic. Waiting on someone else – someone I couldn’t even see – was no easy task. In fact, it took me a number of months to truly be able to wait on God, but since that time I have realized that waiting on God is such a comfortable place to be. In learning to let go of my children (placing them in the hands of the Father), I have experienced overwhelming peace. I have learned to listen for his voice. I am still learning when and how to follow the promptings of His voice, but if not for these circumstances I would still be scrambling to figure it all out on my own. I would still be beating my head against the wall – in despair at not being able to nurture and nourish my children to health. Instead, over time, I have learned to surrender my worry and my fear, and allow the Father to lead me to the next step and the next bit of research, the next practitioner, etc.

Most recently, through a journey of interesting twists and turns (unmistakable navigating by God) we have arrived at some exciting and hopeful next steps LittleM and her feeding difficulties.

This journey has led us to/through: 3 occupational therapists, a chiropractor, a maxio facial surgeon, an ENT specialist, a pediatrician/lactation consultant who specializes in tongue tie, an affiliation of medical professionals who specialize in tongue tie. We also have appointments scheduled with: a pediatric neurologist, a chiropractic neurologist, and the Hershey Medical Center for a barium swallow study.

Wait a minute…what was that last one? A BARIUM swallow study. OH GREAT! This one is scary. Because of LittleM’s FPIES (affectionately termed a “universal reactor” by her primary doc), I have been putting my foot down on this study for months. Each time it has been mentioned by a medical professional I have said, “No, we don’t know if she will react to the barium and how far back it will put her treatment.” So what changed? Actually NOTHING. LittleM had made no progress in swallowing since we started this journey. With months of occupational therapy and a number of foods to try, her skills were actually getting worse.

So, when our practitioners seemed to split – leading us in two completely different directions (surgery for tongue tie vs. alternative therapies to release the tongue)…I began praying. We were headed to Maine for 2 weeks of working on my sister’s wedding and I would have no opportunity to keep working on this while we were there. I had no choice – I prayed that God would just take over. I prayed that he would open the right doors and close the wrong doors. Just a couple of days after I “gave it to Him” the calls started coming in.

READ ALL THE DETAILS HERE OR SKIP TO THE PEACE THAT SURPASSES UNDERSTANDING BELOW

Hershey Medical Center called first. They didn’t just call to talk with me about the studies available, they called to tell me that the test had been scheduled. OK GOD. I guess this is an open door. After we got back from Maine, I started doing my due diligence and called Hershey to check in on what test they were planning. To my surprise it was not the barium free nasal scope study, it was the barium swallow study. I was instantly sick to my stomach, and couldn’t understand why this was the door God was opening. I KNEW this was not the right thing for LittleM – that this would not support the healing protocol that they are on. What could I say though, this was a door that I had not opened – I had to trust that it was God, but just to be sure I prayed that He would keep opening the right doors and closing the wrong doors as I continued on with my responsibilities as a mom. I called Hershey and insisted on speaking with someone who could tell me why this test was ordered and not the one we were asking for. The speech intern that called me explained to me that the other study would not show us anything that was going on in the oral phase of LittleM’s swallow. This one was the only one that would even look at what the tongue was doing. Ok. My final confirmation came when I attempted to reschedule the test date to a more convenient day of the week. Not only did it reschedule for a nearby date, but it was the most convenient date on the books. I had to concede that this was God.

I emailed our team to let them that the barium swallow was ordered and pending. I quickly received an email from out OT with a couple of words of warning about the. She did not think we were going to get the answers we needed from this study and that it would expose LittleM to the barium and radiation for little to no answers. Honestly, I was a little put off by the email for a moment. I was thinking something like, “well this is GOD not ME.” That feeling really lasted just a short time before I realized that this could all be part of the journey. I decided to continue on with my job of due diligence and follow through with all of the suggestions she had given me. I was praying all the while for God to open and close doors. I was NOT going to plow through any door or simply say no (closing any door) on my own.

As the events continued on, it became more and more clear that God was the one at work here. I called Hershey asking them to schedule us with the practitioner that the OT has suggested. The scheduler wanted me to keep the professional we has since they were both skilled at their jobs. Not wanting to push through the wrong door I just sort of went with the whole conversation (not at all like me!). In the end I ended up asking for the first practitioner to call me instead of just rescheduling with the other one. Our OT had also recommended that I discuss the study and what we were trying to see with them to see if they even thought it would be possible. The scheduler sent an email to the first one asking her to call me. She also copied the other professional on the email just so that she would be aware of what was going on. As it turned out, the second professional (and the one our OT thought would be better suited to helping us) called me back by accident – she had thought the email was asking HER to call me.

We ended up going over everything. She agreed with the OT that the study was most likely not going to show us what we wanted to see. She hesitantly asked (almost as if she was out of turn), “how would you feel about coming in for a speech therapy for feeding consult? “

THE PEACE THAT SURPASSES UNDERSTANDING

There it was. It was as if a burden was instantly lifted from my chest. The peace that surpasses understanding. And I finally saw that God was not leading LittleM to something that seemed to counter all that He had been leading us to before now. He was leading us to the right moment, to the right therapy, to the right person. What he needed from me was complete faith AND obedience.

Those steps of faith were not easy to take, but I was prepared to follow His leading all the way no matter where it was going (even we ended up in radiation department of Hershey Medical Center).

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.