Results Are In...

Nathan's last scope biopsy results are in: ZERO eosinophils!!!

This is just plain amazing news! Nathan had been off of the Pulmicort slurry steroid for 7 weeks prior to this scope. This means that avoiding the top 8 allergens is working for Nathan right now and his eosinophilic esophagitis is being controlled by diet  alone at this point! From everything we have learned about EoE since this all began, we knew this could be possible, but that it would be a fairly small chance of it being the only treatment that he would need to control this. We know that it wouldn't be possible without God and all the prayers that each of you keeping up with our sweet Nathan have been feverishly praying! So please, keep sending those prayers up!

Nathan's food list is growing just about as quickly as he is! He has now passed, pears, green beans, squash, carrots, bananas, and raisins! We have moved to a meat finally and Nathan has been enjoying chicken for a little over a week now! So far, so good, and we are praying that it will continue so that he can keep eating it! We will be following up with Dr. Williams (GI) in October to assess how things are going, unless we notice Nathan having a problem with something before then.

Nathan's EoE buddy, Tyler in Arizona, had his scope the Monday following Nathan's. Unfortunately, his esophagus didn't look too good this time. He has been eating very few foods, hardly showing an interest in eating actually, and drinking/being tube fed EleCare. You can read about his story here. I have been in close contact with his mom Julia, and we have become very close these last 2 months! Thank goodness for cell phones, texting, and Facebook! :o) It has been more than comforting being able to share this journey with someone else who knows first hand what life is like dealing with a limited diet, EleCare, g-tubes, feeding pumps that go beep all night long, and soaking wet crib sheets and baby boys when things become disconnected in the middle of the night.

Another friend of mine that I know from high school, her son was just scoped this past Thursday by Dr. Williams in search for EoE. Biopsy results aren't back yet, but visually according to Dr. Williams, he has classic EoE signs. It's heartbreaking to learn of another child being diagnosed with this! I dislike that he may possibly have this doggone disease, but I am so thankful to be able to offer her understanding and support. I guess the silver lining is starting to show through in all of this craziness for me! I would have loved knowing someone at the time of Nathan's diagnosis, it would have made it feel so much less of a lonely place to be. I feel blessed that I may get to be that person for someone else.

Thanks to everyone who reads this blog and for all of your love and prayers sent our way! Please add these other two precious boys to your prayers as well! 

Trooper Nathan...

Nathan had his third scope with biopsies done today and also go this PEG tube switched out to the AMT Mini One Balloon Button. He did great! Thanks to the many prayers being sent our way today! Dr. Williams said that his esophagus looked good, so we are hopeful that the biopsies will second that. This will be excellent news which may mean that avoiding the top 8 allergens will allow Nathan to be symptom free! That is still a challenging diet to follow, but so much better than having him take a steroid just so he can tolerate his food.

We are so excited about the AMT button!!! We can already tell that it is going to be so much better than his PEG tube! It's so nice not having a tube constantly dangling from his tummy. Hooking him up for his feed tonight went smoothly! 

 I will post about the biopsy results when we hear from the doctor, hopefully no later than Monday. At that point we will be scheduling an appointment with Dr. Irani, Nathan's Allergist, to determine which foods may be good to trial next. It is so exciting knowing that there is such great hope that Nathan will be able to manage his EE by diet and not steroids. Please continue to pray for this as we have learned from many others that what works for a while may not always work.

Here are some photos from our day, enjoy!

Such a patient patient, waiting to be called back.

Sleepy Nathan in the recovery room.

Buckled in and ready to head home.

Nathan's new tummy!

Nathan checking it out for the first time.

All hooked up for his first feed! It went great!

No News Is Good News...

That's always been my philosophy, at least. It's my excuse for not being very good about posting these days.

Nathan is doing well and drinking his EleCare like a champ these days, we haven't used his g-tube for a feeding for almost one whole week now! It's exciting, but at the same time a strange feeling because we were relying so heavily on his feeding tube not too long ago to get those precious calories in him. We are thankful he is so eager to drink on his own these days, but this does not mean we can get rid of the g-tube just yet. He is scheduled for his next scope on August 17 and he will also have the PEG tube switched to the AMT Mini One balloon button that day. We are praying that Nathan will continue to take all of his nutrition by mouth, but know that at any time he could revert back to his old ways and not feel like eating, so it is important for the feeding tube to remain for future times like that.

We started giving him raisins this past week, he LOVES them! It's nice to finally have an easy snack that I don't have to cook, chop, and prepare for him to eat it. It's also great since I can just throw a few boxes in the diaper bag when we are out and not worry about keeping them cold like I have to for his other foods! I sure hope that he doesn't have a reaction to them down the road, because this is truly his first "favorite" that we can tell, and he would be heartbroken if we ever had to take them away.

I was just thinking the other day that it's been about 5 weeks since we've taken Nathan to the doctor for a sick visit. This is a record since he started getting sick last September! We are hoping that this continues and that we can start visiting the doctor for well visits and routine checkups with his allergist and gi doctor only. :o) I am going to call the pediatricians office tomorrow to schedule his 18 month well visit with Dr. Terry for August. I can't believe that our sweet baby is almost 18 months old!!! He is getting so big and we are so proud of him!

Nathan sleeping with his big boy pillow!

We're Still Here...

Our little family! 

I apologize it's been so long since my last post. Life has been busy... those of you that currently have or have had a child the age of 16 months should know the kind of busy I'm talking about. Last week was an extremely crazy week filled with dentist appointments, routine car maintenance, working, going to the storage unit to hunt for beach paraphernalia, and packing for our weekend get away in celebration of Mark's birthday!

On top of all this our sweet Nathan, has matured a bit in the way of him thinking he knows what he wants/needs better than his mommy or daddy does. Nathan has become super independent when we are out and if we try to lead him one way and he doesn't want to go, he makes sure to tell the whole store or where ever we are that we are crazy parents who don't have a clue. Occasionally, he will follow the screaming with kneeling down on the floor with his head down and bottom up crying like we are just the worst parents ever. Mark and I knew this time was coming, we were just hoping it would be closer to the age of two? Hmm... maybe since the "terrible twos" have visited us a bit early he will be back to his angelic self by the time he is two? Ha... I'm sure that's a crazy idea! All jokes aside, he is still our wonderful, sweet Nathan and we love him just the same! It's just one of many phases we will go through in this amazing journey called parenthood. 

Mark and Nathan

On Friday, we headed down to the Outer Banks for a quick, spur of the moment trip we only booked the week before for Mark's 40th birthday! We had the wonderful pleasure of watching Nathan's wonderment when he saw the beach and ocean for the first time in his life. Of course, he won't remember it, but we've got plenty of pictures to show him as we tell him the story one day! Nathan wasn't sure about the ocean at first, but he quickly learned to love it and it was hard keeping him out of it! It was a much needed break from reality, and  an exciting preview of our full week-long vacation we are going on in September with some of our dearest friends! We may have to rent a U-haul for that trip, as our car was loaded to the max for this quick two-night trip. You could tell that we were first-timers going away with a child with all that we packed, not to mention all of the extra medical "stuff" that Nathan requires and the fact that I felt the need to bring extras of extras just in case. In the end, I ridiculously over packed, but knowing myself I will do just the same come September's vacation.

Kill Devil Hills, Outer Banks, NC

Nathan has been off of the Pulmicort slurry for a little over a week now. He seems okay most of the time, but we have noticed him coughing occasionally throughout the day over the last few days. He is even gagging a bit more on foods these last few days two. We aren't shocked, as we knew he could regress once the steroid was removed, we were just hoping that he wouldn't. We wont know for sure until August 17th when he undergoes his third endoscopy and biopsy. Right now that seems like an eternity... last night something scary happened while he was sleeping, he woke up crying and then he started 

Dana and Nathan

coughing/gagging/choking all at once, we just knew he was going to vomit, but amazingly he didn't. I had my hand on his stomach and it felt like it was doing flips in his little tummy. I immediately turned his feeding pump off and disconnected it, my worst fear was that his stomach wasn't emptying properly and that he was refluxing and choking on his EleCare in his sleep. He settled fairly quickly and went back to sleep, although I can't say the same, I just laid there and listened to make sure he was okay for the longest time. He still had 10 ounces of EleCare left in his bag, which is a huge portion of his calories for the day, but I just tossed it, as I couldn't bring myself to go through that again.

When he got up this morning he seemed fine and drank his EleCare like normal, he even ate half of a whole banana for breakfast, that I cut up into very small pieces for him, as he still isn't chewing his food well at all. He did great all day, no more weird episodes of choking, until we put him to bed. He was asleep for almost an hour when it happened and he was not hooked up to his pump, so I can't blame that this time. He hadn't had anything to eat for a good hour to hour and a half before we put him to bed. But the same exact thing happened as the night before. Dr. Williams did say that reflux is a very common problem after having a g-tube placed, but I would have thought it would have shown up before now, plus this just seems too scary when it's going on to just be reflux. I am really thinking that he's reacting to something we are feeding him and this may just be the beginning sign of it... only time will tell and we will just wait to see what happens for now. Tonight he had 200ml remaining and I just hooked him up before beginning this post, we slowed the flow rate from 50ml/hour to 30ml/hour to see if that makes a difference. I'm not sure if it will since he did it tonight without being hooked up to his pump. So here's to another day in the life of dealing with EoE and I'm off to bed to lie awake and listen out for every little noise Nathan makes tonight, I swear I feel like I did the very first night we brought him home from the hospital jumping at every little peep he makes.

Beach bum Nathan

Daddy's boy!

G-tube Follow Up Appointment & The 4th of July...

Friday, last week Nathan had his follow up appointment with Dr. Williams 2 weeks after getting his G-tube placed. Dr. Williams was pleased with Nathan and how he has adjusted to his tube so well! Nathan was cleared to take real baths again and also to go swimming! We discussed the possibility of taking Nathan off of the Pulmicort steroid that he has been on since his diagnosis in March... Dr. Williams agreed that it would be appropriate to wean him off of it over the course of two weeks and continue on with the top 8 elimination diet and Prevacid.

Nathan will have another endoscopy with biopsies on August 17 to see how removing the steroid affects his esophagus. Some patients with EoE can control symptoms by diet alone, but many cannot we are praying that Nathan will be one of the "lucky" ones that can. On August 17, Nathan will also have his PEG tube switched out to a AMT Mini One button... we are looking forward to that more than anything. Having to constantly be aware of his feeding tube and where it is and what it might be getting caught on is tiring and the "button" will alleviate a great deal of worry! Nathan had some granulation tissue (GT) forming near his stoma and Dr. Williams treated it

AMT Mini One button

with some silver nitrate it worked wonders... until he spent all afternoon in the pool on the 4th of July. Frustrating, yes, but as with most aspects of EoE being a constant back and forth, we are just dealing with it. It doesn't seem to hurt him thank goodness, but it sure isn't pretty to look at! I will give Dr. Williams a call in the morning to see if there is anything else I can get from the pharmacy to treat it from home. It's only about the size of a pencil eraser right now, which isn't too bad compared to photos I've seen, but we want to stop it from getting worse.

We had a wonderful cookout with some of our dearest friends on the 4th of July! Nathan loved playing in the pool and getting in and out of it constantly over and over again. Fun for him, but exhausting for mommy and daddy! Needless to say we all slept like babies that night! 

OooOOooo... check that out!

Hanging in the pool!

Cooling off with some water! 

Thinking about getting out...
just to want back in 30 seconds later

Drinking water from Auntie A's cup!

Quick Update...

Today will be Nathan's first day back at daycare since getting his g-tube... I know things will be fine, because the daycare is just plain AMAZING, but I'm still a bit worried about it. Nathan has adjusted really well to his tube and isn't hardly phased by it anymore. We will keep it wrapped up and tucked away while he is there since it's only for a few hours and they won't be doing any feedings through it. They did a wonderful job of protecting his NG tube and I know they will do the same with this!

We found it at Target Pharmacy... it's OTC
but you have to ask the pharmacy for it!

Tomorrow is Nathan's 2 week follow up appointment with Dr. Williams, I am excited to talk to him about the next steps for Nathan. Mark and I are sure we want to take him off of the steroid medication and see if his EoE can be controlled by diet alone. This would mean continuing to stay away from the top 8 food allergens, which is fine by us, as long as Nathan continues to find fruits and veggies that work for him. Nathan's stoma was starting to get some granulation tissue this past weekend, but we started using Calmoseptine on it which has finally started making a difference! This morning his tummy look beautiful! The GT  is not completely gone, but I can tell that it is going away and hopefully will stay that way! We will keep using the Calmoseptine  and pray that it will keep it from re-occurring. Today is kind of a big day for Nathan in way of his food trials... he is trialing CHICKEN! I am going to wake him up from his nap soon, and he will be having chicken, carrots, and green beans for his lunch! I am so thankful to finally be able to offer him a complete meal! I am praying that this chicken works and it will be added to the list of safe foods! I am using caution with my excitement in all of this however, because we are very aware that by removing the steroid from his daily regimen of medications could mean that he "fails" the foods he has already "passed" as safe with this last scope. I know chicken is a big problem food for other kids with EoE, so as exciting as it is, it is also a bit scary. But we will just continue as we have and pray that chicken will work and that Nathan's EoE can be controlled by diet alone.

Yummy carrots! Thank you Gigi!

Mom cooked up some whole carrots the other day when she kept Nathan. I have to say that I think they are his new favorite food! We have been reluctant to offer him "solid" food because of his difficulty with chewing and choking on it. But he did wonderful eating these carrots last night! I am happy that he finally has something that he can feed himself! He ate every last one that I put on his plate! 

Biopsy Results Are In...

Got some exciting news about the biopsy results! Nathan has ZERO eosinophils in his esophagus! That means the current treatment is working: top 8 allergen elimination diet, Pulmicort slurry, and Prevacid.

We are excited to know that the treatment is working for Nathan, but we are now questioning what is working exactly. Is it the fact that we've eliminated dairy, egg, soy, wheat, tree nuts, peanuts, shellfish, and seafood from his diet?  Or is it the fact that we are giving him the steroid? Mark and I are going to talk to Dr. Williams and Dr. Irani about this dilemma we are in now. I am wishing we had only done the top 8 elimination first, because for some kids this works and they don't need the steroid. Of course, if it's not needed to control Nathan's EE, then we don't want him on it. He is too young and has many years ahead of him and I don't like the idea of him being on a steroid his whole life.

There is no known cure for EE at this time, only life-long treatments to control inflammation and symptoms. If we were to stop treatment today, his eosinophil count would climb and his symptoms would inevitably return. I don't know what our GI and allergist's ideas will be with this way of thinking and I don't want to go backwards, but I am wanting to take away the steroid, continue trialing foods that are not the top 8 allergens and then see what his next scope looks like. To me, that's the only way to find out if the steroid is helping to control things, or if his diet is controlling things for now.

We follow up with Dr. Williams on July 1st to check on his g-tube and how it's healing. We will talk to him about the above idea then. We are also going to get him to write a referral for Nathan to be able to go to Food Therapy at the Children's Hospital. Nathan is still having quite a bit of trouble eating foods that are thicker than pureed baby food. I was thinking it was inflammation, but the scope ruled that out. So now we are thinking that Nathan is just behind on eating different textures of foods because right when he started eating them we found out about this EE diagnosis and took all of it away from him. So he has never really learned to eat foods with a variety of textures. Food Therapy will help him to re-learn this.

Nathan is still doing great and is just as sweet as he can be... he must have run up to me 50 times today to give me kisses! It just makes me melt when he does that!

Here he is this morning checking out his new tube:

 

Nathan's Home...

After an exhausting two and a half days at the hospital we are finally home. You would never know that Nathan just had a G-tube placed 2 days ago... he's just as rambunctious as he always has been. In fact, the fact that he's so active right now has me constantly worried that he's going to fall on his stomach and hurt himself. So far, so good and I hope it will stay that way. When Nathan got the NG tube one of my worst fears was him pulling it out. I can tell you now that was silly of me and a pulled out NG is no biggie. But a pulled out G-tube... that's something to worry about... although it's being held in very securely I'm told, I don't want there to be any testing of how much tugging it can withstand.

We are currently waiting to hear whether or not The Pediatric Connection (our home health supply company) is able to get this G-tube protector belt for Nathan... in blue, of course, not pink. It has a round cover that velcros over the opening to protect it, yet allow for easy access for feedings.

Benik G-tube Protector Belt

If our supply company can't get it, I think we can contact the company that makes them and pay out of pocket for it, which we will gladly do knowing it's going to protect Nathan's tummy, prevent the need for constant tape on his tummy, and keep him cooler than it would by wrapping him with an ace wrap to keep it concealed. It will be especially nice for when he is at daycare too, since they don't do any tube feeds while he is there.

Another thing we are anxiously waiting on right now are Nathan's biopsy results. Dr. William's said that they should be back Monday (tomorrow!) or Tuesday this week. I apologize for not mentioning anything about the scope Nathan had on Friday along with getting the G-tube. My last few posts were written in haste due to complete exhaustion from working eight days straight before Nathan's surgery, and then being in the hospital all weekend with him. Plus, the G-tube was the "big deal" this time around. Looking back at them and re-reading them, I'm noticing that I've left out some details of our stay. Anyway... Dr. Williams said Nathan's  esophagus looked better than it did last time (3 months ago), no signs of inflammation at all. This is good news and we are hopeful it means that his biopsy results will be good news too. Yet, we do know with this darn thing called EE, you can have the most beautiful, normal looking esophagus during the scope and still have a high eosinophil count. So we are hopeful, but we haven't started jumping for joy just yet. 

Thanks a million to everyone thinking good thoughts and sending up those powerful prayers for us these last few days. Mark and I are handling all of this better than we ever could have imagined. God truly does give us the strength to endure even in difficult times when life just doesn't make sense. He also sends angels  from out of nowhere when you need someone who understands exactly what it is you are going through right in this moment better than anyone else... thank you for being there for us Julia, Efren, and especially little Tyler! We made some lifelong friends this weekend with a family we have never even met, and have been blessed by the kindness and love they have poured upon us these last few days.

Nathan Reading to Curious George...

Back To His Old Self...

Day two was so much better than day one. That's for sure! Nathan was practically his old self today. He only had Tylenol twice the whole day and did great! Mom came by this morning so that Mark and I could go home and shower and take it easy for a bit. That worked out well for Mark, but I just had to get back to the hospital as quick as I could, even though I knew Nathan was in good hands, it's just something about a mommy needing to be with her baby boy when he's just had surgery.

A therapy dog visited Nathan today, you can't tell by the photos below, but he loved her and got so excited when she came into his room. Our dear friends Kristin and Ryan visited for a while this afternoon too. They brought Nathan a Curious George book that Nathan just loved! Later in the evening Nathan read it to Curious George himself, in his own precious babble. Shortly after they left, my dad stopped by for a few minutes, Nathan was asleep, but we made sure to tell him that his GP just came by to see him when he woke up.

Now he is wide awake for some reason, I'm starting to wonder if I'm going to get even less sleep tonight than last night... I'm tempted to tell the nurse to give him some morphine to knock him out... but I won't do that. I am so thankful that his pain is much less today than yesterday and that he doesn't need such heavy drugs to control it. I'm too tired to think about what to write now, so I'll let today's pictures do the talking. Enjoy!

Playing with the huge balloon from Aunt Amanda

Checking out all of the get well wishes from the pre-k class at his daycare! 

My sweet monkey plus two more!

Brushing his teefers

Coloring... or more like playing with colored pencils time!

First taste of something in 39 hours... I'll bet it was the best tasting vanilla flavored EleCare ever! 

Coda the therapy dog came to visit Nathan

Daddy's boy! - Getting his first g-tube feeding! :o)

Plotting his escape

Reading his new book

Pretending that George is the patient and reading to him.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" (1 Thessalonians 5:16-18).

Amazing Nathan...

Nathan amazes us more and more! He has been sitting in his crib and even stood for a few seconds trying to "walk" in his crib. I stopped him because I was afraid he was doing too much too soon. Dr. Williams just stopped by and thought Nathan looked excellent! He still isn't allowed to eat/drink anything as they want to let his stomach rest. We will do his first feeding with the tube tomorrow morning; although he is going to be so hungry he is going to want to drink with his mouth for sure by then!  He did get to take some Tylenol by mouth this afternoon because of a fever, he about swallowed the whole syringe too! Bless his heart, he is so hungry! It's been 18.5 hours since he's had anything, I'd be hungry too! Considering the circumstances he is doing wonderful, only occasionally fussy every 2.5-3 hours when his morphine is due.

Mark's parents visited this morning during his surgery and my mom, dad, and sister came by this afternoon/evening. We are so blessed to be surrounded by such supportive family and friends! We appreciate all of our new found EOS families and all of the prayers that they and their families have been saying. Today wasn't easy by any means, but I did feel some sense of peace and calmness in all of this craziness. I know it's because of God and all the wonderful prayers going up for our family. 

Here are some photos of our day:

Just waking up after first dose of morphine.

Daddy and Nathan

Mommy and Nathan

Nathan's got a lot of buddies watching over him

The most giant balloon ever from Aunt Amanda. Thanks!

So sleepy but having fun coloring. He fell asleep with the marker in his hand and held it tight till he woke up.

Gotta represent CURED!

Sitting up on his own and coloring! :o)

Getting woozy again. 

Whew! What a day! Time to relax and watch some Mickey Mouse Clubhouse!

Nathan's new tummy :o(

Hugging on Curious George

Playing with his new Leapfrog drum he got for being such a brave boy!

Nathan's room sign.... he stayed in the same room when he was here on April 10th getting his NG tube. Kinda neat!

Proverbs 3:5-6

 ⁵ Trust in the LORD with all your heart

and lean not on your own understanding;

⁶ in all your ways submit to him, 

   and he will make your paths straight.

-Thanks for the reminder Dad! :o)