Super Mini Success...

Yesterday, we went to our friends house for a "the day before" Memorial Day cookout! It was wonderful! Mark and I thought it would be a good time to try out Nathan's super mini backpack with his feeding pump on an outing. Nathan was amazing as always and wasn't phased a bit by wearing his super mini all loaded up with his pump and formula! He ran around exploring, picking up every stick he passed and would run them over to us and hand them to us. (I am so in love with my sweet, sweet boy!)My only complaint is that it was very hot outside and the pack just added to his sweatiness. He wore it for about two and a half hours before we decided to give him a break from it so he could cool off. Overall, I would say it was a success!

We ran some errands today with it too and he did great! Of course, when we are just in the car and then putting him in the stroller we don't put it on is back. In the car we just sit the pack next to his car seat and when we get out and put him in the stroller I just hang it on the stroller handle. It works wonderfully and it is so nice being able to leave the house and not get behind on his feedings for the day! I hate that he has to have this, but I am thankful we are learning to use it to it's fullest to make our day less stressful. I would always feel terrible running errands and him going hours without his formula. I mean, I would take it in a cup for him, but of course he wouldn't drink it, so when we would get home I'd be rushing to do a tube feeding... now we don't have to worry about that anymore! :o) Another small victory in learning how to make life a little simpler with EE!

Nathan's first venture out with his super mini:

Here he is cooling off:

Three More Weeks...

Until Nathan gets his G-tube and his 2nd scope and biopsies on his esophagus. We are nervous but ready to take this on. The NG tube was a shock to us at first, but we quickly adjusted and I'm sure we will do the same with this. This is just harder in the fact that it's a surgical procedure. It's very hard having Nathan going through all of this, but thanks to the love, prayers, and support from so many friends and our wonderful families we are finding the strength we need to get through each new obstacle/task.

I realized today that it has only been two months since we got Nathan's diagnosis. It seems like so much longer because of all that Nathan has been through in the last eight weeks. He is such an amazing little boy and we are so proud to be his parents. I look forward to the day when we can talk to him about all of this and he can understand what is going on. It's difficult putting him through so much and not being able to explain it to him. It helps that he continues to laugh, smile, and play just like he always has... so we know things aren't getting him down. His attitude is going to take him far in life!

Changing the subject... Nathan's new super mini backpack for his feeding pump came yesterday!!! It's so much better than the first one he had that was almost as big as he is! He can actually walk around and play in this one and it doesn't affect his balance at all! :o)

Food update: Nathan has been enjoying squash since Wednesday and so far so good! We are still feeding him pears and occasionally bananas. I am a bit worried that the bananas are the culprit of his diarrhea he has from time to time, but we are still "testing" them out. We are praying that his biopsies show a complete reduction in his eosinophil count (meaning ZERO) in his esophagus so that he can keep these few foods in his diet and continue to add more!

Bittersweet...

Today's visit with Dr. Williams went well. Nathan is up to 25.4 pounds which we gratefully thank his feeding tube for! Our thoughts about Nathan getting a G-tube soon were right on. Before we could even tell Dr. Williams that we have been discussing it, he said he thought it should be done during his next scope. We are thankful to have a doctor who is on the same page that we are on! Dr. Williams is an amazing doctor and we know that he truly wants what is best for Nathan.

So now we are waiting to hear from the nurse to schedule his scope/biopsies & surgery to place the G-tube in his stomach. Dr. Williams plan is to schedule it for a Monday and have Nathan discharged from the hospital by Wednesday the same week. There are risks involved with the G-tube, but all are a fairly small percentage. We are praying that things go smoothly and he heals quickly. Nathan will require sponge baths for two weeks after the surgery, and then after 8 weeks the G-tube will be switched out to a flat "button" like port on his stomach. He will be able to go swimming and do all of the other fun things kids his age do this summer once it heals! :o) We are thankful for that, as we have a vacation planned at the beach with friends in September!

Mark and I are doing well with this news, as it was something we could tell was in Nathan's future with how much we were relying on the NG tube. It's a big help being mentally prepared for hearing this kind of stuff when it's time to do it. It's still not a pleasant idea, nor is it going to be a worry-free time for us now counting the days until it happens. But hearing from so many others that have children that have needed G-tubes and hearing that life is better with them over the NG tube helps greatly!

Here is a diagram of a G-tube, for those of you who may not be familiar:

Waiting For Tomorrow...

Nathan's appointment with his GI doctor (Dr. Williams) is in the morning. Mark and I are so ready to see him again and talk about what is in the plan for Nathan over the next few weeks. We know that we will schedule a date in the beginning of June for his next scope/biopsies for sure. But we are unsure about what he will suggest about the G-tube. Nathan got the first NG tube placed on April 10th, and for the last few weeks he has been averaging only 8-10 ounces of his EleCare by mouth daily. Mark and I are relying heavily on the feeding tube to give him his nutrition.

Dr. Williams originally said that he typically only uses the NG tube for 4-6 weeks and well, the 6 week mark is fast approaching. As I've said before, Mark and I are ready to take this next step in this crazy journey of dealing with Nathan's eosinophlic esophagitis. We've got it in our mind that it will be done the same time as his scope in June, and we are hoping that Dr. Williams is on board with that too.

I will post sometime tomorrow to update on how the appointment goes. :o)

National Eosinophilic Awareness Week...

Nathan's picture was included in this years NEAW video! I am so proud to have him be a part of awareness week in this way! :o)

G-tube Time Is Getting Closer...

Mark just called me at work to tell me that Nathan had pulled out his NG tube sometime during the night... the brand new NG tube he just had placed hardly 12 hours ago!

Each time we have an issue with the NG tube leaking, coming disconnected, or being pulled out I am closer and closer to wanting him to get a G-tube! We were already planning on discussing the possibliity of the G-tube with Dr. Williams on Tuesday next week. Now the conversation is going to be talking about the certainty of getting the G-tube and when it can be done. Mark and I are hoping the same time of his next scope in early June a couple of weeks from now.

When the home health nurse came out and weighed Nathan yesterday, he still weighed the exact same as he did 8 days ago... that means that those nights we had problems with his NG tube connection coming loose and his formula going all over his bed and what had made it in to his tummy pouring out of the disconnected tube made a big difference. It made the difference of him not gaining a bit of weight over the course of the week. Every tiny drop of that EleCare is so important to Nathan's nutrition right now and we feel that the G-tube will be a better way to get it in him.

We would be dumb to think that the G-tube is without complications of its own. We know things will never be as easy as feeding our child "normally"
would be. But other parents of kids who ended up with G-tubes all say that their live's and their child's improved dramatically for the better once they took the leap.

Mark and I are ready for the next step in this journey with our son.

Bananas Are Making Me Go Bananas...

Nathan's been eating and enjoying bananas for six day now. I've been feeding him the Gerber Stage 3 bananas... today I decided since it's been almost a week with no issues I would get him some fresh bananas and see how he liked them! Nathan loved taking bites from a real banana and I loved that he loved it! We took turns taking bites at first until he figured it out, then he didn't want me having anymore of it once he got the hang of it! I was a happy mama... for 5 minutes... that's how long it took for it to all come right back up. :o(

This is where EE gets so darn tricky! It's got me thinking, would he have thrown up jarred bananas had I fed him that instead? Was it the fact that it was a whole banana and not jarred? But, why would that matter? I guess we'll try the bananas for another day or two and if the vomiting continues we'll be taking them away.

We're On A Roller Coaster...

The last four days have been rough getting Nathan to drink his EleCare. He could care less about it. I really think that if we didn't offer it to him he may even be happier... I can tell he's getting frustrated that we are constantly offfering him his sippy cup all day long. I have tried a million different cups, and nothing entices him. He will take it from a spoon which is good, but oh so ridiculously slow and just proves to me the fact how much he misses eating food! So we have been constantly feeding him through his NG tube every 4 hours or so. I give him 20 minutes to drink it on his own, then it's down the tube it goes. His virus/cold/cough seemed to be better until this evening. He is starting to cough his little head off right now as he sleeps... I am fearful that another virus is lurking and will make it's full fledge appearance in a day or two. I would give anything to be able to trade places with Nathan right now! What he is going through is just too much for any one, let alone a 14 month old! Our visit with Dr. Williams next Tuesday can't get here quickly enough... we will schedule his biopsy that day for the beginning of June. We are anxious to see what his esophagus looks like and what his eosinophil count is on the biopsies.

Most days Nathan eats like this right now:

Sometimes is nighttime feeding runs into the morning and he's stuck wearing this huge backpack with his feeding pump in it until the feed is finished:

He doesn't let it stop him... he still hops off and on his big truck just fine!

I've said it before and I'll say it again... I don't want to have Nathan grow up too fast, but I can't wait for the day when he can talk and tell us what he's thinking and feeling. But even with that I am realizing that this darn EE is just a very difficult disease to live with and manage and the fact that when he can tell us if something hurts or why he doesn't want to drink won't unlock any of the many secrets of EE. We are becoming more accustomed to the in's and out's of it, but it never fails to throw us for a loop every now and then. There are so many other "EE moms" I have met through this blog and on facebook and I am forever grateful for their willingness to offer advice and tell me that things are going to be okay when times are rough for us.

Angie will be here tomorrow to weigh Nathan and to help me put a new NG tube in on his opposite nostril so that his left cheek can have a break from the tape that is constantly covering it holding his tube in place. I hate when it's time to change his tube... he hates it and it hurts me because he can't understand why we are holding him down and putting a tube down his nose. He really does handle it better that I think I would, but it's just stinks because there is no explaining and reasoning about it, we just do it... he gets mad... and then he gets over it, but it's something that no child should have to endure, especially over and over again like he has to. When Nathan was in the hospital getting his NG tube for the first time, Dr. Williams said that he only likes to use them for 4-6 weeks then it's on to a G-tube. Next week will be week number four nearing week number five. When we meet with Dr. Williams on Tuesday next week, we will be talking about it with him and discussing when to do it. Mark and I have talked and we agree that when he has his next endoscopy in a few weeks that it should be done then so that he won't have to undergo an additional anesthesia to have it placed. It's hard enough having to have him under anesthesia several times a year for his scopes we don't want to do it more than it has to be done already.

It's amazing how quickly Mark and I are becoming okay with the things we are dealing with. I remember watching various videos on the internet about EE the night before Nathan's first endoscopy. I saw kids both with and without feeding tubes and I cried at the overwhelming information I was learning about EE. I was in shock at the depth of seriousness of what Nathan was being checked for. Originally, when Dr. Williams said he was going to check Nathan for eosinophilic esophagitis, I was so happy to have an answer for what might be wrong with him other than "he's just got a bug", that I didn't even ask Dr. Williams questions about it until after the diagnosis was confirmed by biopsy. Dr. Williams is a very optimistic doctor, which I do appreciate. When I asked him about the kids I had seen in the videos about EE with feeding tubes, he said that some do end up with them, but most don't. That gave me hope that Nathan would be in the most don't category. Well, now we are in the midst of living our worst fear for Nathan... the feeding tube. No parent wants to see their child like that, no parent wants to feed their child this way either. I will say that knowing Nathan is getting adequate nutrition makes it a bit better, but it's still a heartbreaking way to feed your child.

I try to remind myself often of different medical issues others have with their children and know even with all of this chaos, we still have it pretty good. We still wake up every morning to our smiley baby Nathan and we still get to give him hugs and kisses before going to bed every night. Yes, learning you have a child with a life long chronic illness that currently has no known cure is devastating. However, I know their are numerous parents out there that have lost their kids to cancer, or other terminal illnesses that would give anything to be in our shoes right now.

18 ounces...

Yesterday, Nathan drank 18 ounces on his own... 10 of them by 8 o'clock in the morning!!! The rest of the day he just played around with an ounce here and an ounce there, but 18 is so much better than just 4-5 like he had been doing.

However, we have now experienced a new problem two nights in a row. Nathan is wiggling around enough in his crib at night while hooked up to his feeding pump and is disconnecting his tube. 50cc/hour of EleCare is more than it sounds like when it's going all over your child and their crib! Plus, the fact that what we've just put through the tube is now pouring out of it as well. This NG tube has been in for almost a week... I've noticed that is about the time when the cap doesn't want to stay on them very well... I guess the opening just gets stretched out over time and use. I hate to pull out a perfectly placed NG tube just because of the darn cap, but taping it to hold it together just makes accessing it difficult and very sticky.

Yesterday morning we went to Maymont with some friends. Nathan loved seeing all the animals, especially the pygmy goats! They were his favorite! We walked around for a while, and found a nice shady spot for a picnic lunch! Nathan had bananas for the first time today... we will see how they do over the next two weeks! He LOVED them! They used to be his favorite to eat! The kids were great and had a wonderful time playing together!

Feeling Better...

Nathan seems to finally be feeling better from this awful virus he's had since Friday! We made it through the day yesterday without a fever and so far so good this morning! He isn't interested in drinking his EleCare still, but maybe he just needs another day or two to get rolling with that again.

For now, we just offer him his cup when it's time and if he doesn't take it we put it through his NG tube with a syringe. It takes about 10-15 minutes, most of the time he is good and will sit reasonably still in his high chair watching TV while we do it. But since we are needing to do it a 4-5 times a day here lately he is beginning to get annoyed with sitting still for so long. This morning he squirmed and fussed the whole time. I hate to see him like that since he's such a happy boy all the time, but it's necessary so that he gets the nutrients his body needs. It's also starting to get exhausting on my part... we can't leave the house until he's been fed through his tube, and we have to hurry home in time for the next feeding. I've just left a message with Dr. Williams asking him if we need to start doing a continuous feed all day long instead of this. We don't want that as Nathan would be required to wear a backpack holding his EleCare and feeding pump all day, which I'm sure wouldn't be much fun for him. But, it may be easier in the long run at the same time. We'll just try to be patient and wait and see what happens.

Hard Day...

Sunday morning Nathan's fever was gone, but he has refused his EleCare like never before the whole day. When he woke up at 6:30am he took 2 ounces and I gave him the remaining 4 ounces through his NG tube. At 12:30pm he took 3 ounces, and I gave the remaining 3 ounces through his NG tube. Normally, Nathan will drink well in the morning, and loose interest as the day goes one.

After a wonderful Mother's Day lunch with Mark's family, we came home and sleepy Nathan laid down for his afternoon nap. All was well until he woke up an hour later. Mark got him up because I was napping in preparation for working 10p-630a overnight. Nathan took 3 ounces of his EleCare for Mark... 15 minutes later he vomited it all up. I got up to help Mark clean him up. I noticed he felt like he was on fire when I was getting him into his clean onesie... he had a fever of 103.9! I immediately gave him some Ibuprofen, which came back up 30 seconds later.

We gathered a few things and hopped in the car and headed to KidMed... what a weekend for Nathan's GI doc to be on vacation...arrgh! This was our third day in a row taking Nathan to the doctor. In the last three days I have learned to expect very little of medical staff that aren't familliar with Nathan's history when mentioning eosinophilic esophagitis to them. Between KidMed and Nathan's pediatrician's office, none of the nurses we've had have ever heard of it. The doctors we've seen at these two places act like they are familliar with it, but I don't get the feeling that they truly understand like Nathan's GI doctor and allergist do. I feel very misunderstood around these people... they don't appear to understand why one episode of vomiting and Nathan not wanting to drink when he has a "cold" is such a big deal to us.

Sunday night at KidMed was a different story with the Nurse Practicioner that saw Nathan... she told us that she has a close friend who's three year old boy has EE too... she put her hand on my shoulder as she told me this and I felt compassion and understanding just pour out of her and I could see it in her eyes. I literally felt a weight lifted off of me, because I knew she understood how big of a deal this is. In two days, since I took Nathan to KidMed on Friday afternoon he has lost just under 1 pound... she understood how serious this was and knows how frustrating it is to work so hard at getting him to gain weight for it to be lost so quickly because of a virus. She is leaning towards that being the cause of Nathan's illness right now, which is entirely possible. But my motherly instinct being on high alert about any and everything that could be a sign of an EE allergy is telling myself that he has now been eating pears for a little over a month... that's near the time frame his reactions have taken in the past before the vomiting started. So, I'm thinking.. is it just a cold/GI bug? Is it a cold and his EE because of the pears causing the vomiting? There are so many variables with EE and it's so frustrating to try and firgure them all out!

For now, we will keep Nathan on Zofran to help with the vomiting, which if it works will mean this is most likely not EE related vomiting which will be great news! By the time we got home from KidMed it was 9:30pm and Nathan had only had 12 ounces of his EleCare all day... there is no way we can get all 20 ounces that he is lacking in his overnight feeding because we were instructed to mix his EleCare half and half with Pedialyte until his stomach calms. So he will likely loose more weight before he starts gaining again. I hope that by the time I get off of work in the morning he will be feeling better and will be able to drink well for me. I'll be sure to update in a day or two to once I know where this is going.

I apologize for the long post... this weekend was just way too eventful for us in all the wrong ways!

Happy Mother's Day!!!

I hope all of the amazing moms following this blog have a wonderful day! :o) I ams so honored to have sweet Nathan in my life! Even with all that we are going through with him right now, he is such a blessing and teaches me every day to keep on smiling no matter what! I love him more than anything!

Quick update: We have been battling a virus of some sort over that last couple of days... high fevers up to 103.3 at one point, runny nose, and cough. Nathan is still hardly drinking any of his EleCare right now... I hope that once this virus is gone he will be back to drinking well again. We have been feeding him through his NG tube during the day and at night because his intake is so low. Nathan actually pulled his NG tube out last night right before Mark was getting ready to do a feeding while I was at work. I am so proud of my wonderful husband for being such a trooper helping the home health nurse put it back in! I've always known Mark was an awesome daddy, but he has really shined here lately with Nathan and all of his extra attention he requires these days. I am so thankful for all that he does for our family! Nathan's fever was down this morning. I am praying that it stays down so that we can attend a Mother's Day lunch at Mark's parent's later this afternoon.

Here We Go Again...

Just got off the phone with the Gi doctor... Nathan has been decreasing his oral intake of EleCare again and is getting another NG tube placed today. I know it's for the best but this is just so hard and so frustrating!!! I don't want Nathan to grow up any faster than he already is, but I long for the day when he can tell us what is hurting him and exactly how he is feeling and why he doesn't want to drink his EleCare. All of this guessing and not knowing for sure is enough to make me crazy!

Constant Worry...

So I've noticed over the last few days that Nathan has very mild tiny light pink bumps on the back of his neck... I assumed it was a heat rash of sorts and not much else. This morning however, when getting him dressed I noticed that they have now spread to his shoulder and very faintly on his forehead. He has never had a problem with eczema, minus one spell he had when he was just a few weeks old that was fairly short lived.

This is just one more aspect of how tricky this EE can be! Now I am wondering if it is from the apples? He has been eating them now for one week. Do I keep feeding them to him to see if it worsens? Do I stop them now and see if it goes away? I hate not knowing what to do with this... I don't want to make the rash worse, but I don't want to take away the apples if they are not causing it! It's one of only two foods that he can eat right now for crying out loud!

I am trying to remain positive, but this is all so frustrating. We are still in the very early stages of food trials, and I am sure we will have plenty failures to come, but as a mother how do you continue to feed your child something that could be hurting them, and how do you continue to take food away from them? It's a mother's natural instinct to nourish her child, but Nathan's EE is making it a daily struggle for me to act on this instinct. It honestly hurts me that I have to limit Nathan's food in such an extreme way. And now this new worry that what I am feeding him is hurting him just makes me feel worse.

A New Way To Eat An Old Thing...

Thanks to Gigi, (my mom and Nathan's grandma) Nathan has a new favorite way to eat his apples! Today we went and visited GP & Gigi for the afternoon. Gigi had a bunch of apples in the fridge that she didn't think they would be able to eat before they went bad, so she sent some home with us! She told me to peel them, cut them in chunks, microwave until soft and mash them up for Nathan... instant homemade applesauce! Thrilled of a quick and easy NATURAL way to make something for Nathan, I went home and prepared some. I thought they needed a bit of something extra and was brave and added a dash of cinnamon to them! Nathan was beyond thrilled and ate the equivalent of one whole apple in just minutes! He even cried for more when they were gone! I'll bet I've just fixed him from eating regular applesauce ever again! But that's fine by me, because it's tough as a mother not being able to feed your child a huge variety of food, so if I have found a way to make something for him that he actually gets excited over, I'll do it anytime! As I've learned from reading other EE mom's blogs, learning how to cook/prepare a variety of meals with limited ingredients will become easier as time goes by. But it's a scary thought, because it's not a way I've ever thought to cook. This is just a itsy bitsy simple thing today, but I'm proud of myself for making something new for Nathan that he likes! I will be a pro at cooking with limited ingredients one day! Another small victory that makes me realize... I CAN do this!

Nathan was zonked after a fun afternoon with GP & Gigi:

Homemade cinnamon apples:

So Far So Good...

Nathan has how been eating apples for five days and things seem to be going well. He is not as eager to eat the applesauce as he is when we feed him pears, but he does eat it, and more importantly, things are staying down! I finally got a whole pear this week and peeled it and sliced it up for Nathan. He loved it! I had put this off beacuse of a fear of him choking on it... Nathan had a hard time eating real solid food prior to his EE diagnosis. Which now we know was due to the inflammation in his esophagus because of the EE! Being a first time mom, I just thought it was a normal part of learning different food textures, in the back of my mind it didn't quite make sense as often as Nathan would choke and gag on things, but I didn't have any reason to think otherwise at the time. Hindsight sure is 20/20! No problems with the bites of pear getting down his little esophagus! I cut the pear in slices and let him take bites, he was very proud of himself you could tell! Pear juice was dripping down his chin and he was smiling from ear to ear!

Smiling big after his first bite of a whole pear:

Patiently waiting for more: