Good news!!!

I am pleased and grateful and excited to announce good news for my boy!! Everything went smoothly the day of the EGD and couldn't have gone better. The give him a little oral Versed beforehand and then they let me go with them into the procedure room until the mask goes on him (with the medication that puts him to sleep), so he doesn't even remember me leaving him. I'm so grateful they let me stay with him so long. Other places have not been nearly this liberal! He did great up to the EGD. He couldn't eat anything and the EGD wasn't until after 10:00 but he did a great job and was very patient! 

I waited in the waiting room and Dr Brigman came out to tell me the results. I had my legs propped up and I nearly jumped out of my seat when I saw her! This is what she said:

the esophagus looks great. There were NO signs of an Eosinophilic reaction (which is what happens if he eats foods he's allergic to). In the past it has been EXTREMELY evident and undeniable through text books signs of EoE. She can't technically tell me all the foods he's eating are 100% safe until we get the results of the biopsy back, but he chances of the biopsy showing anhinga are extremely small with such a great looking scope. This HUGE!!! He has been medication-free for almost a year so this really was the TRUE test as to whether these foods were safe or not. So all the foods he is eating now are safe for him. What an AMAZING list to have in our favor. Some people who have EoE have a list of only a few foods they can eat, or they are on steroids long term. Jude is on no mess and can eat

Chicken

Turkey

Pork

Fruits

Vegetables

Olive oil

Salt, pepper, sugar

Honey

Coconut

Cod (he takes cod liver oil so I'm assuming cod is okay!)

(And his other vitamins to get technical) - probiotic, digestive enzymes, cumin/turmeric

This is the biggest stride we have made. We are so incredibly grateful and humbled. EoE is a relatively new disease due to the rise in allergies and autoimmune disorders so thre really is no "right" way to treat this. In many ways we have just had to be prayerful and pave our own way. I have felt undeniably guided in all this. I'm so thankful for the path that we've taken and that we were able to avoid the elemental diet and so many other distressing paths of EoE. As long as Jude is avoiding the offending foods, he is essentially perfect and as normal and healthy as any other child (I might even say more due to his incredibly healthy and nourishing diet!)

There were a couple hiccups in the EGD findings. There were some reddened, thickened areas in his stomach that indicate a high acid production/delayed gastric emptying. There was also a small bit of bile somewhere there shouldn't be. From what I gathered, these are relatively small issues. I am going to find a natural acid-reduced to avoid Nexium, etc and see how that helps. I need to figure out what the other things mean. Im not really sure yet. But they are minor issues and I know we can get them taken care of. Dr Brigman was mildly concerned because he is asymptomatic so that shows its not that bad.

I'm planning on introducing quite a few more foods over the next year or so and just watching him very closely for any signs of a reaction. If we are slow and conservative and smart (refer to allergy testing done in the past) then I feel like we will be able to tell if something we introduce bothers him. And I will wait a minimum of three weeks in between introductions.

We have to wait until we get the biopsy results back and then we will decide what foods we want to introduce next. Then we will have allergy (prick) testing done later this month and then we will move forward! Jude is so funny. As he's heard me talking about this he'll say, "Mommy, I don't need any new foods. All the foods I'm eating are fine." I think we just doesn't like all this attention on him especially since he doesn't really understand all that is going on and what the process entails.

Thank you all for your concern, love, prayers, and support. If any of you are struggling with allergies/Eosinophilic Esophagitis and would like to talk, just comment and I would love to help in any way I can!

Baloo helped him get through the waiting period!

George was with him every step, even during the EGD! 

A little groggy after the EGD, but he did great and loved the homemade Popsicles we brought for him to have afterwards!

Eosinophilic something something.

It's time for another EoE (Eosinophilic Esophagitis) pos! You think I would write these more often but I don't, and then the night before his EGD I'm like, oh I need to update everyone (and myself) before things change again! So here is my latest post from last October...

http://rachaelmulder.blogspot.com/2014/10/big-eoe-update.html

We were going to have an EGD last October but we ended up putting it off. Then we were going to have it in April, but we had to put it off because he kept getting "croup," or more accurately exacerbations of his reactive airway disease. (Or whatever. Boring details.) 

We can't do an EGD if he's had any type of illness or virus or cough or ANYTHING or it will be 100 times worse after the EGD because of him being under general anesthesia. So we had to wait until he was "all better" for a while. So here we are. He's been taking these cumin/turmeric pills that decrease inflammation and who knows, maybe it's a fluke but he hasn't gotten sick or had any respiratory issues since we started him on those. 

Since my last update in October, besides the recurrent "croup," he has been really rockin. We have introduced pork and coconut which have been HUGE life-changing additions. We are so grateful he has done well with these new foods. He is still completely off all medications. He takes a Kalire probiotic, digestive enzymes, the cumin/turmeric pill, and Green Pastures fermented cod liver oil every day. I make him homemade juice every other day and that keeps him from being constipated (The Miralax and Milk of Magnesia never helped.) He is gaining weight (which he was NOT when he was on the Neocate formula and prescription medications). He is climbing up the charts for height and weight. He has normal bowel movements every day (you do NOT know what an achievement this is!). He never throws up. He rarely complains of a tummy ache but nothing beyond how any other child would. He occasionally has an itchy throat (was mostly in the Spring so was probably mostly pollen/seasonal allergies). He wheezes occasionally but I think that's related more to respiratory inflammation than an allergic reaction. He eats an incredible diet and has an awesome appetite. He eats very well. Lots of meat, vegetables, fruit is an after-meal treat. And now homemade coconut milk. He is thriving better than I ever could have dreamed. And Abraham is certainly being blessed by all this. We all are. We have learned so much. Jude is obedient, confident, tender-hearted, loving, faithful, protective, brave, and imaginative. I adore this little boy more than I could ever say. I'm humbled to be his better and grateful to be the one to work hard for his success. I wouldn't want it to be anyone but me by his side every day. I'm so incredibly lucky to have him.

I feel peaceful about tomorrow and although I'm bummed Dan won't be there, I'm ready to do this and move forward. I pray the doctors and nurses will be on their A-game for my boy and that when Dr Brigman walks out to the waiting room to greet me, she will have a smile on her face.

(Abraham will randomly go up to Jude and say "hi" and then open his arms up for a hug.) UMMM!!!! 💔💔💔

BIG EoE update!!

Well, this post is long overdue. But I'm excited to be writing it now and just want to spill everything out as thoroughly and clearly as I can. Everything is

          falling

               into

                    place

and I am grateful, humbled, overwhelmed, anxious, and pretty much everything else I could be. But this isn't about me... it's about...

JUDE! I just glanced at my last post (and an email I sent out to family and friends) so I will update from there.

(For those of you who did not get the email, I will attach it here because it's a good synopsis of where we were:

Hello dear friends and family! 

As you all know, we are battling a nasty allergic autoimmune disease with Jude (Eosinophilic Esophagitis). I think you all know bits and pieces, but I want to share an update and ask for your help.

His last EGD (or "scope") was PERFECT. Thank you for all your encouragement and prayers! The only problem is, he was on a steroid prior to that EGD, which heals the erosive esophagitis and inflammation in his throat. (We had been trying to avoid it up to that point, as it's kind of like "cheating." He could still be eating "unsafe" foods but look perfectly clear due to the steroid. But the steroid is not healthy to be on long-term [or even short-term, really]). Although his diet was drastically more limited, it had been over a year that his throat was damaged and we were desperate for healing. 

Well, he has been off the steroid for several months now. So, this next EGD is the true test. Right now his diet consists of all fruits, all vegetables, chicken, turkey, olive oil, and sugar. If this next EGD appears clear and the biopsy returns no eosinophils (white blood cells that shouldn't be there at all) then we KNOW all those foods are safe. That would be an incredibly HUGE step as it would give us a large foundation to be the basis of his diet and start adding foods to. (It can sometimes take YEARS for these kids to get this many foods on their "safe" list.)

We have felt so guided in this journey and are making lots of important decisions through the guidance of the Spirit. We have learned that Heavenly Father truly guides us to receive revelation and inspiration to help our children and puts people in our lives that we need.

Last EGD, I had some friends and family pray and fast in his behalf. I felt the power and support in that but believe there is so much morepower that can be utilized. Much has happened since then and I have witnessed first-hand a literal healing through faith, prayers, and the power of the priesthood. Healings occurred in the times of Jesus. Healings occurred in the times of the pioneers. And now I truly know that healings occur today, and just as miraculously. I am fervently asking you all to join me with your faith and call upon the powers of heaven and pray for Jude...that he will heal, that his scope will be clear, and that we will be able to move forward. I have faith in your faith. I believe that God is ready and willing to bless us, but many times he is waiting for us to ask. Please pray for this precious little child. Please fast for him or include him in your fasts. I know that the priesthood is real and so are the desperate pleas of a mother. 

I so appreciate all your love and support. We are excited to move forward and form our army of faith for our truly angelic little child that fills our days with so much joy. We have an appointment with his gastroenterologist on September 20th and will schedule the EGD for shortly after that. I will let you all know the exact date when I find out.

We truly love you all and are so blessed to have you in our lives. Thank you for standing behind us!!!!

Love,

Rachael (and Dan, Jude, and Abraham)

Moving on...

A couple months ago, we began introducing our "new foods," which were ginger, cilantro, basil, garlic, and hemp hearts. I have continued to study different approaches for healing through diet, spoken with some other EoE moms, and just been constantly praying and pondering and trying to figure out what to do. I started to get nervous about his next EGD. He had an appointment with Dr. Brigman on September 22 and an EGD to be done later that week. A month or so before the appointment, I decided to take him off all his new foods because I was afraid his EGD would not be clear (because he had been given the steroid the last time it was clear, which is kind of like cheating, in order to heal). I thought the risk was too high to have all the foods he was already eating, be off the steroid, and introduce the new foods previously listed.

If the EGD was not clear, we would be in such a hard place. What is causing the eosinophilic reaction?! Is it the "normal" diet he has been on, the lack of steroid, or the "new foods?!" I felt there were too many unknowns and answering these questions would be extremely difficult. I thought that if he was just on his original diet of turkey, chicken, fruits, vegetables, olive oil, sugar, and salt and pepper, then that would be a really strong foundation and if we could just KNOW that he was 100% clear on those, that would be such an incredible base to move forward with.

So, the morning of the appointment came. I had butterflies in my stomach like I was getting ready for a big date or a job interview. Soo much had changed. Last time I had spoken with Dr. Brigman, we had agreed to introduce beans, potatoes, and rice.

NOW... I had completely shot that idea down and decided to introduce other, weird-ish foods. (Some of which he had not even been allergy tested for, because they don't normally test for those foods). Then I just took him off all new foods altogether. I had called her (Jude's gastroenterologist) a few months back telling her I was considering the GAPS diet and asked her for her opinion. She said it's "not appropriate" and meant for children with Autism. Although I did not have her approval, we have moved forward and are still committed to doing the GAPS diet. I had taken Jude off his Nexium without her approval. I researched the drug and did not feel good about keeping him on it. (If you are interested in the details of this, let me know and we can talk about it). I also completely weaned him off his prescribed Milk of Magnesia and Miralax to help with his "constipation" issues. I had also decided to wean Jude off of his Neocate formula. This has been his main source of nutrition for over a year and a major crutch for me not having to worry so much about him getting balanced nutrition through food. Oftentimes he would just drink a cup of Neocate and barely eat a thing for a meal.

So, I was nervous. I felt like I was defying her wishes and paving my own way and I was worried about how I would be able to explain myself. I felt confident and sure in the decisions we had made and the way we were moving forward, but if it came down to any sort of discussion where she was on the other side, I would not be able to defend myself against a physician who really knew her stuff. I prayed that I would be able to express myself and that we would be able to have a clear conversation. I prayed fervently that I would know what I was supposed to do to help Jude. I wasn't quite sure what path that was and I was desperate to get some answers and clarity. I oftentimes feel like I am Jude's gastroenterologist, dietitian, and allergist because I am the one really defining his plan of care, choosing the foods we will introduce, monitoring his symptoms and adjusting his diet as needed, and even performing mini allergy skin tests at home. We see the doctors every few months and they pretty much just agree with what I say and tell me to keep on going. They don't have a lot of "answers" because everyone approaches this condition so differently. It has been extremely overwhelming for me to feel the weight of having to care for my child and feel like his health is dependent on my efforts. I have in many ways put this great load upon the Lord and asked him to help me because it's obvious I can't do it on my own.

I prayed that whatever the outcome was, that I would feel sure about the path we were supposed to take. We waited in the doctor's office and watched the construction site from the fifth floor window. We studied the picture of the GI pathway on the back of the door. Dr. Brigman walked in and the conversation began. I just kind of word-vomited everything we had/had not been doing. I told her everything I just told you and also about how well he is doing clinically. He had only thrown up once in the last several months (and that was driving on a windy road), he hadn't complained of his throat or stomach hurting in over a month, he has a good appetite, and he has had a normal bowel movement every day for the past several weeks completely on his own. He was doing incredibly well.

She looked down at her paper and then looked up at me, "And he's not even on the Nexium?!"

"No... I said."

To which she replied, "I have chills. I'm speechless. I am so impressed by everything you've done."

Boom. Fireworks.

As we continued to talk, she said several times how proud she was of us and how excited and impressed she is with how well he is doing. As I continued to explain to her about our plan for Jude, she kept saying, "I feel so good about this."

I'm pretty sure at one point I saw tears in her eyes. I told her how I got nervous and took him off his new foods. We talked about how he could, clinically, he looks perfect and how he is on an extremely low-risk diet with no risky foods and we stick to it 100% and never fudge. She said that she did not share my same concerns about the steroid "cheating" on his healing and healing him falsely. She said that the steroid just "seals the deal" and if he was ingesting anything that was irritating to him, he would not have had a COMPLETELY PERFECT scope like he did. She said that she is as fairly certain (as much as she can be) that he is still perfect on the inside and that it was not necessary to do a scope right now and put him through that "just to be sure." She really felt that he was still doing very well internally and it would be prudent for us to introduce a few new foods, monitor him closely for any reactions, and then scope him again  in the Spring, a year from his previous scope.

Hello! Game changer.

It took me a little while to absorb it all, but as I mentioned, I have been very prayerful about all this and prayed specifically that the doctor's appointment would go well and I would feel good about a decision and be able to move forward.

I felt good about this. And heaven knows she did. She had tears in her eyes for goodness sakes. I truly feel that my prayers were answered through her. Heavenly Father knew that I needed that confirmation. I can do all the studying I want and feel good about things myself and have the support of my family and friends, but I still just really needed that support from his doctor. Someone I trust. I needed an experienced gastroenterologist to say, YES, PUT HIM ON THE GAPS DIET. YES, INTRODUCE HEMP HEARTS AND FERMENTED COD LIVER OIL. YES, KEEP HIM OFF HIS NEXIUM. YES, WEAN HIM OFF HIS FORMULA. (All these decisions that she previously did not support).

I truly believe that she was touched by the Spirit to "feel so good" about all this so that she could support me and I could feel confident enough to move forward.

So, no EGD right now. We are introducing hemp hearts first because as we are weaning off his Neocate he is lacking a lot of nutrition and he needs that nutritious "milk."

That same week, a couple other things happened that reinforced to me that this decision was right. People were placed in my path as little angels to help me along the way. I could not and can not deny that my prayers were very clearly answered and that we are moving forward in the right direction. That feels good!

There is a lot more I want to share and a lot that has happened since all this, but that is for another day! My prayers were answered. Your prayers in my behalf were felt and appreciated and answered.

Thank you.
THANK YOU.

We are excited to move forward and I will try to post again soon with more updates!

When allergies get harder.

When your six month old's diet (besides breast milk) consists of 90% egg yolks and your toddler has an anaphylactic allergy to eggs... It's adds a whole new dimension to the allergy game. >> Mom Paranoia <<

The boys and I were sitting down for lunch together today eating avocado, homemade bone broth, and homemade cultured salsa (not Abraham on that one). I poured Jude some broth and told him it's like medicine, that it will help him grow big and strong and help his allergies to get better. (We often talk about how as he gets older, his allergies will get better and there will be more foods he is able to have.)

His eyes lit up and he said, "My allergies get better?!"

I then explained further and tried not to get his hopes up so much... :(

I noticed him thinking and while furrowing his brow he said, "Why me have allergies? I not touch bread...?" (He knows if he touches bread he gets allergies.) He went on, "When I get bigger, I eat bread? When I get bigger I eat bread like Daddy's?"

Heart ---> broken. I almost cried right then and there. (But I kept it together.) When we were first finding out about Jude's allergies, I read a mom somewhere write about how we, as the mother of an allergic child, need to be aware of what kind of attitude we have and how we deal with the allergies. If we complain and carry on and "poor baby" our child, and act all "wo is me/us" about it, then that is how our child is going to act and grow up feeling so bad for themselves. We need to face them in a matter-of-fact manner and just move forward. I try to approach it this way and not act like I feel bad for Jude if he can't have is or that. (Even though of course I do!)

I think this has made a huge impact on how Jude sees his allergies and how we approach it as a family. He has literally never complained about not being able to have something. There are times when he will ask, "I have that?!" and when we say no and explain why, he understands. 

I try my best to have food for him and other things that he CAN have. It is incredibly difficult at times, but it is also a huge blessing that he has never had Goldfish, macaroni and cheese, fruit snacks, Puffs, or any of the other CRAP foods (excuse my French, I'm referring to a reference from the book "Super Nutrition for Babies") America feeds their children. We have learned so much and have completely altered how we eat for the better!

A more detailed update of his progress is coming soon. We are in the middle of lots of big decisions right now!

He really enjoyed his green smoothie this day. "I want strawberries in it. And salad."

"Take picture, Mom!" 

Homemade hemp milk

Jude and I just made our first batch of homemade hemp milk... and let me tell you... it is delicious! I am so excited about it. Jude likes it! Plain hemp milk is good, but I added some frozen mangos and it made it colder and sweeter and THAT is the good stuff. I want to try blueberry hemp milk soon, too. Hemp is one of the new foods we are introducing for it's many health benefits. We will have another EGD come September and if that's clear, we can keep the hemp. If not, we'll pretty much have to start from square one. Let's pray!!!

Having hemp milk will open up soo many doors for us. We can make creamy soups, milkshake/ice cream type concoctions, creamy sauces and dips. Maybe we can even make a type of cereal! We will certainly have more luck baking having a milk to use as opposed to just water. I will certainly try baking something soon with our banana flour and hemp milk! Please share if you have any ideas for us!

Food matters.

Food has kind of taken over my life lately. We are all about it. We are learning to eat more nourishing, healthy foods, whether we like them or not. And we like it. It is extremely satisfying to see Jude gulp up a wholy healthy drink with a smile on his face. Earlier today I made him a juice that consisted of (all organic):

Frozen peaches

Fresh-pressed apple juice

Hemp hearts

Parsley

Kale

Olive oil

Carrot

Sauerkraut

Ginger root

We don't have a juicer but we use our Blendtec and it works! It feels good to just drink up many of the healthy things you need for the day in one glass. 

Anyone else gotten into juicing/green smoothies?

I love a good trip to Whole Foods. I went to Wal-Mart the other day while on a road trip and could scarcely find anything to eat/anything I considered real food. My desire to eat chicken, beef, pork, eggs, or milk that is not organic is low. Have you seen Food, Inc? You should! You will understand why I say what I say! Jude's diagnosis has been an ongoing struggle, but it is definitely a blessing in disguise as I have learned so much out of necessity and an incredible desire to help my child. I am grateful that we are going through this with our first so we have been able to make these changes now. I will feed Abraham and our other children very similar to how I feed Jude (with obvious differences, I will feed them raw dairy and many other things Jude can't have... but no wheat or other junky milk products/processed foods). 

We introduced hemp into Jude's diet as the last food in this phase of his food reintroduction. He seems to be tolerating it well as far as we can tell. Let's hope and pray for a clear EGD come September. It's never too early to start praying so please join the forces and start praying for him!

Our visit to Las Vegas has been so nice. We spent a few days here then went to a family reunion in Durango, Colorado for a week. Have you ever been there? It is GORGEOUS beyond gorgeous. 

Jude has been enjoying storytime with Mimi, swimming with Papa, tummy tickles with Tubby, and play time with Abraham. Abraham has been enjoying grabbing everything in sight and putting it in his mouth. Abraham is the most content, pleasant little child on Earth. It's a little ridiculous to tell you the truth. He never complains. He just smiles and laughs and gives big hugs to whoever is holding him.

Summer vaca is treating us well. More to come.

.

Ginger for my ginger.

Well, there's been a change of plans in Jude's journey with Eosinophilic Esophagitis. As an update to this post, we are doing things differently that originally planned. There is soo much to say... and I could never write it all, but here goes!

We had the allergy testing done but are NOT introducing beans, potatoes, and rice as previously planned. I felt like the goal of his GI doctor and the way we have been looking at all this is to get him on a more "normal" diet. "Ohh, if he could just have wheat..." I would say. (Or corn, or dairy, etc...) "It would be so much easier." Hence, a push towards beans, rice, and potatoes... trying to get him a more "normal" diet with heartier foods. After much study, thought, and prayers, we are taking a TOTALLY different approach to his food reintroduction.

I felt like there were two paths to take. There is the traditional path, where you add foods one at a time and then get an EGD and just HOPE they tolerate it and have no eosinophilic reaction to it. If it works, great. If it doesn't... bummer. Cross that food off the list. I felt like I wasnt giving Jude a whole lot of room to succeed or putting allies in his corner. Going from a diet of ZERO grains for over six months to throwing in the very starchy beans, potatoes, and rice seemed to be like it would be hard on a sensitive little stomach that has a rough track record and has never done well with grains. That would have been a lot to handle and I think there would have been a great chance for failure/some sort of reaction/an upset GI system. Doesn't that seem a little silly to introduce such tough foods so fast? He is growing and thriving right now, so what is the rush?

The other path is a more natural, holistic approach that uses diet as our ally, the GAPS (Gut and Psychology Syndrome) diet. Though not backed by scientific research (I've been very skeptical), the basis of it is and there is no risk involved. Instead of giving him "normal" foods, I'm going to be giving him bone broths and fermented vegetables. These foods are powerful foods that will help his "gut" to heal so that he can eventually tolerate more foods than he otherwise would. Instead of just keeping him from being sick, my goal is to HEAL this child.

I have decided to take things very slow and safe. I have been researching immune-healing foods high in probiotics (good bacteria). What are the healthiest, most healing, constructive foods we know of? How can I incorporate those into Jude's diet? The first food i have chosen is ginger root. 

The other foods I have chosen are garlic, cilantro, basil, and hemp seeds.

We haven't introduced the hemp yet, but it's next on our list and we're really excited about it! We are going to make homemade milk from it. This will be the only milk he can have so it will open up a ton of doors for cooking and baking.

We added basil because it was an ingredient in chicken sausage that I really wanted to give him. Garlic and cilantro were mostly for flavor (though they definitely have their benefits). I have been learning how to ferment and incorporating those foods into his diet, he eats sauerkraut occassionally, but I sneak a little sauerkraut juice into a smoothie every day. We currently have cultured salsa in the fridge and fermenting ginger carrots and sauerkraut in the pantry.

I am so beyond excited about everything we are learning and eating and changing. We are making HUGE changes as a family and it is incredibly empowering. As much as we can (but 100% for Jude) we are going all organic and non-GMO and trying to follow the Weston A. Price Foundation guidelines (grass-fed, pastured beef, pastured, cage-free chicken and eggs, butter from grass-fed cows, raw milk, raw dairy [ideal but difficult to find/make]). We have a long way to go but we are enjoying the journey and taking baby steps every day. (Baby steps onto the elevator... I'm ON the elevator..., AHHH!!!) We are making a couple juices/smoothies every day full of carrots, spinach, kale, ginger, carrots, blueberries, hemp seeds, etc... and loving it.

I have not fully started the GAPS diet as it takes MuCH preparation and know-how. I will be cooking for many hours and I still have a lot to learn before I am ready to commit to it. But for now, we are takin our own version of the diet and just incorporating the concepts from it into what we can do now.

We are learning to approach food in a completely new way. We eat certain foods because our bodies need those nutrients and they are incredibly healthy, regardless of whether we really "like" it or not. We do all we can to eat real, whole foods, raw fruits and vegetables, sprouted grains, and food how it naturally occurs in nature. 

Today at lunch Jude had a smoothie with (all fresh, raw, &organic) spinach, parsley, carrots, mango chunks (these were frozen), apple juice (organic, fresh-pressed, but pasteurized), and ginger. He loved it and I loved watching him drink all those nourishing foods!

When we make a raw carrot ginger juice (strong flavor!) and we are all drinking it, Jude enjoys it and drinks up! He says (with eyes squinted), "This is so. Yummy." I die every time. Nothing makes me happier than seeing him chow down on sauerkraut and drink a juice packed FULL of nourishing foods.

There is so, so much to say but I will stop there and try to write more frequently! I can say that I have been extremely guided through this whole process and things have been coming together in an incredible way. Pray for us and especially for Jude that his next EGD (September) will be clear!

A smile.

As an update to my last post, Jude had his EGD on April 24, 2014. The long-awaited day finally arrived and it could not have gone more smoothly. It's about a five minute drive to the outpatient center where we had it done and the staff were soo good to us. Jude was such a good sport, as always, and didn't complain about us having to wake him up early and wait for a couple hours without being able to eat or drink anything. We know our prayers and the prayers of many friends and family were answered this day. We really felt extra strength with us.

This was probably our smoothest EGD yet. It was our fourth. They let me take Jude all the way into the Operating Room (Scope Room?). I stood by his side, the anesthesiologist put the mask on him, and before he could even fight it he was asleep. He never had to remember me leaving him or even being in that room. They only take about fifteen minutes. It doesn't take long to look at such a tiny little tummy. We anxiously await in the waiting room waiting on the results. The first three times it was not good. We were so hopeful that maybe this time would be different.

We were sitting on the far end of the waiting room and before we knew it Dr. Brigman opened the door. I popped up and waved so she would know where we were. I will never forget seeing this cute lady eagerly trekking across the waiting room with a big smile on her face. I think I turned to Dan and said, "She's smiling!!" There was so much hope. I don't remember exactly what she said, but in a few words she told us that he was all healed and looked "perfect." I instantly burst into tears of joy! I kept asking her in ten different ways to tell me again. We skipped back to the post-operative area and we got to see our baby, who was still under the effects of the anesthesia. They pulled a rocking chair over for me to sit in and put Jude facing me on my lap. He didn't have a hard time recovering like last time. We brought some frozen fruit juice popsicles for him and he munched on those and really liked them. I'm sure they felt good on his sore throat. He was a doll and we were all on cloud nine, including little Abe who was more than willing to go along for the ride and support his big brother and bestest buddy.

Our faithful friend, George, came along for moral support.

So, it looked good but we still didn't know for sure until the biopsy results came back. I got a call while at the park with a bunch of friends and, after having not left my phone for days awaiting this phone call... I missed it. I called the number back and they said their office was closed on Fridays and there was no way to leave a message or speak to anyone unless you pressed the number saying you were a doctor. So I pretended to be a doctor for a second to get through and they were able to transfer me to the nurse. She told me she had good news and that he had ZERO EOSINOPHILS! This was our big goal from day one and we finally achieved it. I don't remember the exact numbers, but he had 80 on his first biopsy (80 thousand, or million, or something.. per high powered field). The second time he had 60 something, the third time he had 25.

So now he is perfectly healed on the inside. We know take him off the steroid he was on (Pulmicort slurry) for about a month and a half... and then the fun begins. We redo allergy testing in mid-June and then start reintroducing foods! The doctor wants to get some hearty things in his diet so, if he tests negative for these things, we will start out with

beans,

rice,

&potatoes!

HELLO! It's very exciting. We will give him beans for one week and if all seems well, we will add rice the next week. If all goes well again, we will add potatoes and then have another EGD. And if it is still clear with zero eosinophils, we will know those foods are safe for him and then we can do it again with more foods! If it is bad again, then that is a huge bummer because you have to take away these foods he was just enjoying. The way I understand it, some people with EoE do well and are able to add more and more foods and it's almost like a positive feedback cycle. While some just continue to reject almost everything they try to add and are left with only a few foods they can eat. Let's hope for the first scenario. I am hopeful this will be the case with Jude since his Eosinophil count went down with each EGD and the second to last one was almost clear. I like to hope there were only one or two things in his diet then that were causing the irritation. We just need to figure out what those things are. I hope he will continue to "grow out" of his allergies and eventually he will have a relatively normal diet and not have to rely so heavily on Neocate for his nutrition.

We are so excited and grateful beyond expression for how he is progressing and how this last EGD went!!! Thank you for all your prayers and well wishes. We truly felt your strength. We are looking forward to our next step and will keep you posted!

EoE update.

A long past due update on Jude's EoE needs to be done today because it will change tomorrow! Jude's last EGD was 12/26/2013. For the six months prior to that, we had eliminated

soy, wheat, eggs, dairy, nuts, corn, rice, potatoes, peas, beef, lentils, and mustard. 

We felt hopeful that that would be all it took to clear his esophagus of the eosinophils and have a perfect (or close to it!) EGD. That list included everything he tested even slightly allergic to in allergy testing, plus the lentils, which we just noticed he got hives every time he ate them. He had been nearly completely free of outward symptoms such as throwing up or hives.

"Quinoa bread"

This diet was difficult. Cooking was quite an adventure. We saw lots of quinoa, buckwheat, and millet. We would spend hours slowly searching each aisle of every health food store in town squinting our way through every ingredient list. Corn was my nemesis. Corn defiles everything. It was the most annoying thing. We couldn't have gluten-free anything. I thought about what a luxury it would be to be able to buy a gluten-free flour or mix. All gluten-free stuff has either potato, rice, or corn in it. We did get our hands on some black bean pasta that certain Whole Foods stores carry (100% black beans? Brand is "Simply Asian.") Not the stores here, though. My mom would bring them out from Las Vegas. We even tried some seaweed pasta. Not the biggest hit. It was clear and really slimy. (And zero calories. Zero everything. Weird.) 

The day of the EGD came. (It was originally scheduled for December 14 but had to be postponed because Jude got sick). We arrived at 7:00 and the EGD began at 10:00. Longest. Morning. Ever! They let us walk him into the room where the procedure would be done and meet everyone that would be doing the scope. They let him pick a stuffed animal from the shelf and he picked a little pink bunny. It was so nice to be able to go back with him but leaving him was just as hard. 

We waited anxiously in the waiting area. Dr Brigman walked out after a while and told us it was "not good." She explained that he had delayed gastric emptying (which we didn't know about), some residual reflux, and a still imperfect esophagus covered in plaques (looks like powdered sugar everywhere). His eosinophil count for his last EGD was 80. (It's like 80 million or something, i don't remember exactly). This EGD it was 25. Big improvement! But normal is zero. We met Jude in the recovery area. The anesthesia had NOT agreed with him and he was hysterically crying and inconsolable for what felt like forever. We were finally able to calm him down with a little juice and popsicles (that he really shouldn't have even had) once he finally gave in enough to try a little. Dr Brigman came around and talked to us again. We decided to give in and put him on all the medication we had been trying to avoid. We put him on a low dose of Erythromycin to help with the delayed gastric emptying, Pulmicort (a steroid to help heal the esophagus and keep the eosinophils out), and Miralax for his constipation. He was already on Nexium so we were continuing that but doubling the dosage from 10 mg to 20 mg. The Pulmicort is taken as a slurry. It is mixed with Splenda or powdered sugar and it coats the throat as it goes down.

We decided to eliminate his diet more, along with the medication, to heal his esophagus and get him better. It had been over a year that he had an unhealthy, damaged esophagus and we were willing to try anything. His diet was then changed to

chicken, turkey, fruit, vegetables (not peas), olive oil, sugar, salt, and pepper.

Nothing else. That has been his diet for the past four months with a huge emphasis on meeting his goal for his formula every day (where he is really getting all his nutrition). This diet has been a breeze. A store here (Sprouts) sells a rotisserie chicken that is just chicken and he really liked that for a while. It's usually a little chicken and a couple slices of fruit and that's his meal. I don't have to worry about feeding him nutritious or well-balanced meals because he gets all the nutrition he needs from his "milk." We had a follow-up appointment about a week after his EGD. That week he was taking in about 1/3 of his caloric nutrional needs every day. I was really beginning to worry about how he was going to maintain his health while not taking in nearly enough. The night before his follow-up appointment, Dan and I sat down and had a good long talk and were truly inspired to come up with a smokin' hot plan about how to get him to reach his goal. I'm going to go into it in case you or someone you know is in a similar situation and may benefit from hearing what we did. 

(Some grapefruit pomegranate chicken Dan came up with)

 

(Lunch was canned beets this day...)

This cake for his second birthday took hours and was truly a miracle!

He still talks about the "school bus bed."

Our doctor had told us he needed to be drinking 36 oz of his formula (Neocate Jr) per day. That was that. No tips, advice, or anything to help. That was a lot of fluid for a little guy. Not to mention a lot of the same strong flavor. At that point he was drinking about 15 oz a day. The goal seemed impossible. Up to that point we had been preparing the formula just as directed on the bottle. Add 4 oz of water to 4 scoops of formula. That equals 5 oz total. 

We sometimes would add a little less water so he would be able to drink it easier/faster. But then we found the measurement of "oz" to be an inaccurate guess. Shouldn't we be measuring the actual amount of formula ingested instead of the fluid volume? We did some calculations and came up with some figures. Jude's goal of 36 oz per day was equivalent to 1,071 calories. This many calories was contained in 29 scoops of Jude's Neocate. (One scoop equaled 37 calories.) Therefore, his daily goal of Neocate was 29 scoops. This goal was assuming he ate no regular food. Any regular food he ate was just bonus. That way we were shooting for the stars and able to keep a completely accurate count of how many calories he was ingesting and not have to count calories on food (which would be extremely difficult, time-consuming, frustrating, and inaccurate). (He never eats all of something. It's two bites of this and one of that.) 

We decided to start mixing his Neocate powder with anything and everything we could think of. Juices, soups, smoothies, applesauce, Popsicles, etc. We packed it in and made it much more concentrated than it said on the bottle.  We made it as concentrated as he would tolerate. We counted scoops and would record it every night in an Excel spreadsheet, as well as his weight every morning. 

This proved to truly be inspired, there was no way that little body could tolerate that much formula mixed only with water and that consistency. But by making it a little more concentrated and adding variety made it so he was able to take in a great deal more. Also, it says to not cook Neocate. We wanted to make him little cookie type things or have that option. I called Neocate and found out the reason it is not to be cooked is because it alters some of the vitamins and minerals. The caloric value is the same and (don't quote me on this) the main components of it (protein, carbohydrate, etc) are all the same. It was just some of the smaller vitamin and minerals that were altered. So if cooked infrequently, it was okay and the calories could still be counted. We made him little "pumpkin cookies" and things like that but not often because he didn't really like them and there was not a lot we could do to them to make them better as we had no flour of any kind (or anything else one would normally bake with).

Our plan worked! He started to get closer and closer to his goal every day. There have even been a few times he has even met and surpassed his goal! I figure if he is able to get an average of about 24 scoops per day, he gets the remaining few hundred calories he needs through food and juice. I'm satisfied if he reaches about 23 or 24 scoops. I mean, the Neocate is nutritionally complete. Meaning it contains everything he needs to survive and be healthy and is nutritionally balanced. How many two-year olds do you know meet their gold standard caloric goal for the day in a perfectly balanced and healthy manner? It is good. As time has gone on, he tolerates/drinks more and more. He is steadily gaining weight and so his growing body needs more. I am thankful evey day that he likes that Tropical flavored Neocate and usually drinks it pretty willingly. 

His average Neocate scoops for January was 21.6. For March is was 23.6. (February and April aren't working right now; I'll update later.) The trend is steadily increasing and getting closer to 29. We track his scoops, weight, bowel movements, and if he throws up. His weight on Day One of all this (1/12/14) was 24.4. Three months later on 4/21/14 it is 26.4. Pretty remarkable for a boy who can't eat hardly anything and has a very poor appetite. (Some people with EoE can't tolerate the amount of formula they need by mouth to stay healthy and they require feeding tubes. That is why I was so concerned at first and feel so grateful we came up with this plan and Jude is excelling (no pun intended) so much.)

Now to tonight. Jude had an appointment with his doctor on Monday and she was happy with his growth and how he appears to be doing. But the only way to really tell how he's doing is to get another EGD and obtain a biopsy for eosinophils. We are going in tomorrow morning at 7:00 and we are so excited and hopeful. I know I shouldn't get my hopes up but it's too late for that. I already have! Dan gave Jude  a blessing tonight and it was lovely and hopeful. We will be able to tell a little bit by how things look tomorrow immediately after the scope but we won't really know until the biopsy results come back, probably sometimes next week.

I truly feel blessed for Jude's health. It has been hard but it could be so much worse and I'm grateful that, overall, he is a happy, healthy, thriving child. I love him so, SO much and am so immensely grateful for our insurance, our doctors, nurses, dietitians, WIC (his formula alone would cost over $20,000/year), the stores that order in and carry Neocate just for Jude, the Neocate company itself, modern medicine, and all those who have helped him on his path to health. 

I am especially grateful to my Heavenly Father who watches over us and gives me strength to face each day with strength and stay positive as we try to get this precious little boy healthy.

 

("I hold baby, self, Mommy.")