tag:blogger.com,1999:blog-51000053783762912292024-03-12T21:36:36.533-04:00Journey With NathanNathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.comBlogger81125tag:blogger.com,1999:blog-5100005378376291229.post-24868469170975783092013-09-19T22:01:00.003-04:002013-09-19T22:14:46.237-04:00Headed Down A New Road...<div style="text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">It's been nearly 4 weeks since Nathan's scope, which by the way was not good. His EOS counts were high again indicating that the foods we were trialling (potato, chicken, rice) were hurting him. Mark and I have given tons of thought to our options and weighed all the pros and cons of each over these past 4 weeks. We aren't 100% comfortable with any of the options.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Our two options are:</span></div>
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<span style="font-family: Times, Times New Roman, serif;">1.) Keep doing what we're doing with no steroid treatment and continue getting no where. (We've been at this 2.5 years now and haven't been able to find anything safe to add for the last 2 years.) Trialling and removing foods has been awful, such an emotional roller coaster for all of us.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">2.) Start him on a swallowed steroid and begin food trials again in hopes that the steroid will work it's magic and allow for us to find more "safe" food for Nathan. I use the term "safe" lightly here... as these foods are highly likely to be unsafe if eaten without the steroid medication. In essence, the steroid medication will keep his body from sending out army's of eosinophils to his esophagus when he eats food. For some kids this works wonders and for other's it doesn't help. Medicating him so he can tolerate eating healthy foods just doesn't make sense to me, it's so frustrating! We already do this with the Erythromycin we give him 4x a day for his gastroparesis, which I hate the idea of just as much. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Since the scope on August 22nd, Nathan has refused to drink ANY of his EleCare... he used to guzzle it down. This has nothing to do with the scope, in my opinion, just a timing coincidence... he says it tastes bad and that's why he doesn't want to drink it anymore. Can't argue with that at all, I wouldn't want to drink the stuff either. So we tried Neocate Splash "juice" in the tropical fruit flavor. He drank half of an eight ounce box the first one I gave him which was encouraging, but ever since he's refused to take more than a "baby sip", which equals sucking on the straw until the "juice" barely touches his tongue and then he stops and says, "I'm full." I tasted it to see what it was all about.... didn't think there was such a thing that tasted worse than EleCare, but there is... it's Neocate Splash tropical flavor. The fact that it's a wannabe "juice" yet it's a milky white color doesn't help thing either. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Ever since Nathan was diagnosed our goal has been to treat this disease with as little medicine as possible and attempt to control it by diet alone. Two and a half years later that has turned into him literally surviving off of EleCare (probably the most unnatural, chemically induced "food", ahem... medicine out there) since he's just not into eating these days even his few safe foods. We are forever thankful for it because it's kept him ALIVE and GROWING, but it's really not in the category of us treating this disease without medicine. That being said we are going to go with option two and are going to try the steroid treatment. Another EoE mom shared her perspective, that it's better to give the steroid and have your kid be able to eat many REAL healthy FOODS vs. no steroid and living off of EleCare and minimal real foods. I couldn't agree more... where was this mom and her advice 2.5 years ago!?!? The lesser of two evils that's what we're going with.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">I spoke with Dr. Williams tonight and he agreed that it was time to give this a try. So he's calling an an Rx for Flovent tomorrow morning and we'll start it then. Excited about the possibility of Nathan being able to eat more "normally", but scared of the unknown long term side affects. Most kids who are on a steroid regimen treatment for EoE have not shown terrible side affects, but since it's an "off-label" use for the drug and there haven't been any long-term studies conducted for this particular use of the drug it's nerve-wracking. Taking this medication won't "cure" him of this disease, it will hopefully, allow him to be in "remission" from it. There will still be many food trials and endoscopies in his future to see if it's working or not. The steroid will need to be taken twice a day... FOREVER. If the steroid is working and we stop it, food could start hurting his esophagus again. So if for any reason we need to stop the steroid in the future, he'll loose the foods we added while he's on it and go back to just a few safe foods.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Since Nathan has ZERO safe meats/proteins right now, Dr. Williams wants us to go ahead and trail turkey and beef. If we can get Nathan some protein, we can reduce his EleCare volume which is the ultimate goal! Nathan's diet will still be quite restricted compared to a "normal" kid, as we will still avoid the top-8 allergens. That doesn't bother us as our goal with this steroid isn't for Nathan to be able to eat chemically infused, processed "normal kid" junk food, we are just desperate for him to be able to eat HEALTHY REAL WHOLE FOODS without it making him sick.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">We appreciate all of your thoughts and prayers as we turn down this new road, as it's one that's not been an easy decision.</span></div>
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Here's our perfect, angelic, baby boy, fast asleep tonight as Mark and I made our decision.</div>
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Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com1tag:blogger.com,1999:blog-5100005378376291229.post-43448987579253310082013-08-18T22:28:00.001-04:002013-08-18T22:28:18.239-04:00Past 6 Months Update...<div style="text-align: justify;">
Sorry it's been so long since my last update... Nathan's been trialling 3 foods (potato, chicken, & rice) for the past 6 months. This is his second attempt at trialling these foods. Things were going great from the start when we added potato in the beginning of March. Six weeks later we added chicken, and he vomited once a week for the first 3 weeks of the chicken trial. I talked to Dr. Williams about it and he felt we should continue on with trialling it and chalk it up to being a random coincidence. So that's what we did. We had another appointment with Dr. Williams on May 20th and Nathan seemed to be doing okay with both potato and chicken so Dr. Williams wanted to add one more food before the next scope. He gave Nathan the choice between rice and apple, and Nathan chose rice. I wish I had taken a picture of his face when Dr. Williams told him he could trail another food. It was as if he had just been told that he was going to Disney World the next morning. Pure excitement! Priceless and oh so heartbreaking all at once.</div>
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The vomiting stopped after that 3rd week, but around the beginning of June Nathan began refusing to eat chicken. At first I thought he was just being a typical picky 3 year old, but after about a week of him refusing and choosing his EleCare over chicken and complaining of it hurting his tummy we decided to stop pushing it.</div>
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Another variable to the puzzle, is that Mark and I decided to stop the erythromycin in the beginning of June that we had been giving Nathan four times a day since March for his delayed gastric emptying. In hopes that maybe the delayed emptying was a flukey thing and that his little stomach would empty just fine on it's own. All seemed well but gradually Nathan was refusing to eat any food or drink his EleCare for most meals of the day and his g-tube was leaking like crazy again by July. A good day during this time would be him drinking about 10 ounces of EleCare and having 4-5 bites of food for the entire day. Nathan needs 36 ounces of EleCare to maintain the calories/nutrition his body needs to grow. We resorted to hooking him up to his feeding pump during the day and occasionally at night to get his nutritional needs met. Nathan would tell us that his tummy was full when we would try to get him to eat or drink even when there was no way it could/should be. He also vomited several times, so we started him back on the erythromycin on July 17th.</div>
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By August 1st he had his appetite back and would eat potatoes and rice but would refuse his other safe foods that he used to love. A couple days later he developed cold-like symptoms and a very hoarse voice that he even lost completely at one point. I took him to the pediatrician on August 6th and he was diagnosed with Tracheitis. So we started him on a steroid and antibiotic. Nathan seemed like he felt better about 3-4 days later, but his appetite still hadn't returned. Wednesday August 14th, finally he was hungry! The boy ate potatoes, rice, and raisins like nobody's business all day long. He still won't eat his green beans, carrots, pears, bananas and we're not sure why. Maybe it's just typical 3 year old behavior? Who knows.</div>
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In the past few days is appetite has been hit or miss. He'll tell us he's starving and ask for something to eat. Which breaks my heart, because even though he isn't "starving" thanks to his EleCare and feeding tube, he literally would be without it. We'll make him something he asks for and then he'll say he's not hungry. "I'm just good mama.", is his usual reply when I set his food on the table when he's having an off day. So we are really, really, looking forward to his scope this coming week. We aren't too optimistic that it's going to be a passing scope, but are trying to remain hopeful. Nathan's symptoms are so sporadic/atypical that it makes it so hard to tell what's going on. </div>
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Your <span style="font-family: Times, Times New Roman, serif;">thoughts and prayers are greatly appreciated as Thursday rolls around. Even though this will be scope #6 for Nathan, it doesn't make it any easier for us to hand him over to the doctors. In fact, I think it gets harder each time knowing that there are risks with anesthesia and the endoscopy itself. It's hard to not wonder if this will be the time that something goes wrong. For now we'll remain positive and r<span style="background-color: white;">emember: Proverbs 3:5 <span style="line-height: 20px; text-align: -webkit-auto;"><i>Trust in the Lord with all your heart and lean not on your own understanding; </i></span></span></span><i><span style="background-color: white; text-align: -webkit-auto;"><span style="font-family: Times, Times New Roman, serif;">in all your ways submit to him, </span></span><span style="background-color: white; font-family: Times, 'Times New Roman', serif; text-align: -webkit-auto;">and he will make your paths</span><sup class="crossreference" style="background-color: white; font-family: Times, 'Times New Roman', serif; font-weight: bold; text-align: -webkit-auto; vertical-align: top;" value="(<a href="#cen-NIV-16462I" title="See cross-reference I">I</a>)"></sup><span style="background-color: white; font-family: Times, 'Times New Roman', serif; text-align: -webkit-auto;"> </span><span style="background-color: white; font-family: Times, 'Times New Roman', serif; text-align: -webkit-auto;">straight.</span></i><br />
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Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-10190766497229155742013-03-18T23:34:00.001-04:002013-03-18T23:34:42.199-04:0037%...<div style="text-align: justify;">
I talked to Dr. Williams tonight and Nathan's gastric emptying test showed that Nathan's stomach is emptying 37% in 90 minutes. A normal individual's stomach should empty at the rate of 50% in 90 minutes. So yes, he has gastroparesis. :o(</div>
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We have tried so hard to avoid medications treating his EoE and have been fairly successful, avoiding his trigger foods and Prevacid has been working well. I guess EleCare would be considered a medicine too, but without it Nathan wouldn't be here, so maybe we aren't avoiding medicines all that great after all, but I am just happy we are able to keep him off of the steroid treatment for now. Giving him a daily steroid just doesn't sit well with me. We made need to go there one day, but Mark and I aren't ready for it just yet. We are still faithful that we can find Nathan foods he can tolerate without it.</div>
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Unfortunately, there aren't many options other than taking medicines to treat gastroparesis. So Nathan will begin taking Erythromycin (a low dose antibiotic, grr!) 3 times a day... forever... or until this magically disappears which, at this point I don't know enough about gastroparesis to know if that is even possible.</div>
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So, I'm one disappointed momma tonight finding this out. Trying to look on the bright side, and think about the positives, Nathan getting his appetite back, and for his g-tube to stop leaking all over the place! I am thankful for all of the wonderful medical advances in today's world, but it frustrates me to no end that medicine is required to get Nathan's little body to work like it's supposed to. Eating healthy food should make your body function appropriately, but EoE is a crazy thing. :o/</div>
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Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-29758024915651904132013-03-17T22:26:00.001-04:002013-08-18T17:29:35.974-04:00Scope #5 & Gastric Emptying Study...<div style="text-align: justify;">
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<span style="font-family: Times, Times New Roman, serif;">Nathan's scope on February 28th went great! Based on Nathan's lack of interest in food over the past several months Dr. Williams was surprised to find his esophagus is such good shape visually. The furrows had healed and there was no inflammation! The highest eosinophil count from his biopsies was 12.... a bit frustrating to me because he's had 0 in the past with the same foods he was eating, but nonetheless it's a low enough count to be considered a pass. (15 is the minimum number were EoE is considered to be uncontrolled) So it's cutting it close, but we're going with it and trialling potatoes again!</span></div>
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<span style="font-family: Times, Times New Roman, serif;">We started the potatoes on March 6th and I wish I had gotten a picture or video of Nathan's excitement when I told him I was cooking him potatoes for breakfast that first morning! It's been 12 days since we started them and about 3-4 days ago he started with a runny nose and the dreaded coughing and gagging at night. Mark and I have both been a little under the weather the past week too, so we are going to keep the trial going and just pray it's a cold he has. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Since Nathan's scope didn't reveal a reason as to why he's not been interested in eating lately along with the fact that his g-tube has been leaking like a faucet when he's hooked up to his pump at night, and the fact that I mentioned that broccoli pieces Nathan had consumed 24 hours prior were still in his stomach when I vented his g-tube one night Dr. Williams wanted to do a Gastric Emptying Study to check on his stomach and how it is emptying.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">A zillion years ago, way back before we even knew that EoE even existed, Nathan had an Upper GI Barium Swallow test done to try and figure out the reason for his constant projectile vomiting. The results showed delayed gastric emptying and a pyelorospasm. At the time we were told that it was likely due to a milk allergy, so we stopped the dairy and continued on with the barfing until we discovered it was in fact, EoE. At that time we were so happy to find out what was wrong with Nathan and once we began treating it his symptoms improved we never gave those results another thought, until now.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">The Gastric Emptying Test was done last week on March 14th. We are hoping to get the results tomorrow... the wait is about to make us crazy! So I'll be sure to update once we know what they are and what the plan is. I don't want him to have another diagnosis alongside his EoE, but gastroparesis would certainly explain why he's not hungry at mealtimes. For now, we'll practice our patience and wait and see what Dr. Williams says.</span></div>
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<span style="font-family: Times, Times New Roman, serif;"><i><span style="background-color: white; text-align: -webkit-auto;">"Be anxious for nothing, but in everything by </span><sup class="crossreference" style="background-color: white; font-weight: bold; text-align: -webkit-auto; vertical-align: top;" value="(<a href="#cen-NASB-29449B" title="See cross-reference B">B</a>)"></sup></i><span style="background-color: white; text-align: -webkit-auto;"><i>prayer and supplication with thanksgiving let your requests be made known to God."</i></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">In recovery after his scope on February 28, 2013</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This boy can do anything with Mickey and Gigi by his side!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Brave, Nathan laid perfectly still like this for 90 minutes!</td></tr>
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<span style="font-family: Times, Times New Roman, serif; font-size: x-small;"><span style="background-color: white; text-align: -webkit-auto;">Not the greatest picture of the first image, but you can get the idea of what his tummy looked like at the beginning and towards the end of the test. </span></span></div>
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Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-25115898096703564822013-02-18T23:06:00.001-05:002013-03-17T21:45:57.996-04:00Appt. With Dr. Williams...<div style="text-align: justify;">
Alright... so I failed to post about Nathan's biopsy results from back in November. That's partly because the news wasn't good, just as we expected based on what Dr. Williams saw when he did the scope and partly because I just thought that maybe if I didn't post it, it wouldn't be true. Silly, I know, but it was my way of thinking and then... time just got away from me also.</div>
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So the results showed 30-35 eosinophils in all areas biopsied, which means his EoE is active and not under control. His esophagus also showed furrowing which is a sign of damage to the esophagus caused by the elevated eosinophils. When Nathan was first diagnosed in March of 2011, his counts were 75+ and he <i>didn't</i> have furrowing of his esophagus, just another way this crazy disease makes no sense at all. No wonder it's so hard to treat. Ugh.</div>
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Today we met with Dr. Williams again to determine the next step in Nathan's course of treatment. He will have his next scope on February 28. This will be his 5th scope in two years. Since his scope in November and removing so many foods Nathan's appetite has been terrible, at first we thought is was just him adjusting to having his favorite food (potatoes) removed from his diet, but it's continued on now for 10 weeks. Nathan will say he's hungry, we'll offer him the 6 foods he can eat and he either wants none of them and grabs his EleCare, or he'll say he wants something, takes one bite and then tells us he's not hungry. Needless to say, mealtimes, which we don't even really do in our house anymore, (because every hour or so we're offering him food in a desperate attempt to get him to eat something) haven't been fun. It makes for an exhausting day constantly pushing food on Nathan in hopes he'll want it. He lost weight in December due to this, so we have increased his amount of EleCare and he's done pretty good drinking it on his own, but we are back to using his g-tube fairly regularly again, but because of this he as regained the weight.</div>
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Last week he ate two small bananas one right after the other and then asked for a third, I was elated because he hadn't wanted a banana other than jarred baby food banana in weeks. The third one he just looked at and didn't touch, I didn't mind because he had just had two, but since that day he won't even touch a banana now. This is pretty much what he does with all of the foods he's allowed right now. It is so frustrating!!! He'll eat something pretty good for a day or two and then want nothing to do with it for a week or longer. We are at a loss as to why and Dr. Williams is also. We are hoping that the scope reveals an answer, which means his counts will still be high. Which is a double edged sword; it will explain why he's not interested in eating right now, but it will also mean that these 6 foods he "passed" last year are no longer safe.</div>
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A couple of weeks ago Nathan was begging Mark for some broccoli, Mark gave it to him out of desperation for him to eat that day even though it wasn't one of the 6 "safe" foods, Nathan enjoyed it. He's asked for it off and on and done well with it so far. Today he asked for it for lunch and he ate the tops off of two pieces and then said he was done. For dinner tonight he asked for it again, and ate 4 whole pieces, which made Mark and I happy. (It's kinda sad when your child eats 4 pieces of broccoli and you're excited and think that he ate a good dinner, but that's what we do.) Aside from his EleCare this is all he ate today, and this is what a normal day is food-wise for him currently. It's very frustrating as a parent to hear your child say, "I'm hungry" and then them not want to eat, or just barley eat and then say they are finished. Frustrating isn't strong enough of a word... it's downright heartbreaking. We hear this from Nathan daily. It's awful.</div>
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So, we've definitely moved backwards with all of this EoE stuff this winter, but Mark and I are trying very hard to remain optimistic and keep our faith that this will get better and Nathan will be able to eat without food hurting his little body one day. Some days are harder than others, but most days are good, we've lowered our expectations for him for now so that we don't beat ourselves up too much over how hard living with this really is. He did so well in the beginning once he was diagnosed and we began treatment that Mark and I kind of lost sight that this can be a back and forth process treating this disease. Despite all of this though, Nathan remains his happy, silly, energetic little self for which we couldn't be more thankful. He smiles all day long and has no idea how amazing and strong he is. He mentions a food that he can't eat because it makes his tummy hurt, and follows up with, "I'm so sorry, mommy." Bless him, he's so content with a situation that would be unimaginable to most.</div>
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<i style="font-weight: bold;"><span style="font-size: large;">Rejoice always, pray without ceasing, give thanks in all circumstances.</span></i></div>
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1 Thessalonians 5:16-18</div>
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Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-66778827314419789382012-11-30T22:48:00.003-05:002012-11-30T22:48:32.458-05:00Scope #4...<div style="text-align: justify;">
Nathan had his fourth scope yesterday morning and it's taken me all day yesterday and today to begin to process what we learned. While we don't have his official biopsy results back yet, visually Nathan's esophagus looked very inflamed to Dr. Williams similar to what it looked like when Nathan was first diagnosed with EoE. We will know his exact biopsy eosinophil numbers next week. In the mean time Dr. Williams wants us to go back to the food Nathan was eating when he scoped clean last August. That leaves Nathan with 6 foods plus his EleCare; bananas, carrots, green beans, squash, pears, and raisins.</div>
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Nathan wants nothing to do with these six foods right now. Yesterday, I thought it was just because he had the scope done and didn't feel like eating. He's never been that way after a scope though. Today, he ate one small box of raisins, two green beans, and two bites of cooked carrots. The carrots even had caramelized brown sugar on them and still he had zero interest in them. He's asked for his favorites today, potatoes, fruit snacks, and his Enjoy Life cookies a couple of times, but agreed when we told him that Dr. Williams said that he thinks they could be hurting his tummy. Nathan just replies, "okay" and continues on with whatever he was doing. Bless him for being so agreeable right now. God certainly knows our heart strings can't take but so much tugging when it comes to him wanting food we can't feed him right now. We've been honest with him about this whole situation, but it's just a hard thing to try and explain to him in a way that he understands but we must be doing an okay job of it since he's not throwing too big of a fit when we tell him he can't have something.</div>
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We have a follow up appointment with Dr. Williams on December 17th, we will further discuss our plan for Nathan at that appointment. Right now Mark and I are thinking that we will try our best to get Nathan to eat these six foods and then re-scope in 6-8 weeks to be sure that they are in fact "safe" foods for him. After that, things will go one of two ways. If his scope is clear we will most likely begin trialling foods one at a time and scoping in between to make sure his esophagus is tolerating them. If the scope is bad, we will have to remove all foods and go completely elemental (meaning Nathan will get 100% of his nutrition from his formula EleCare for a while in order for his esophagus to heal before trialling any food.</div>
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For now all we can do is wait and pray that things get better from here. We know that God has a great plan for our sweet Nathan and that this is all just a tiny part of a much larger picture. We are thankful to be surrounded by such amazingly supportive family and friends. We'd be lost without you all.</div>
Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-1526176559074507852012-11-14T22:53:00.000-05:002012-11-14T22:53:08.353-05:00Appt. with Dr. Irani...Today we met with Nathan's allergist, Dr. Irani. He's doing well and she is pleased with his progress with growth and weight gain since the last time she saw him 6 months ago. For now, we aren't changing anything with his diet because he appears to be tolerating things for the most part. Since our last appointment with her we've added broccoli, white potato, rice, spinach, and his most "normal" kid friendly snack ever, Welch's Fruit Snacks to his diet. From the outside he seems to be doing well with these foods, however, he has thrown up from time-to-time these past 6 months and Dr. Irani thinks that it could be a sign he has active eosinphils in his esophagus.<br />
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Nathan is scheduled for his next endoscopy this month on the 29th with Dr. Williams. We will know for sure after we get the results from the biopsies he takes during the scope whether or not Nathan can continue with the foods he's been eating. We've added so much and it's been well over a year since his last scope, if this one isn't good it's going to be a major setback trying to figure out what is triggering his EoE reaction now. But for now, I won't consume myself with worry over the many "what if" scenarios.<br />
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Today's visit did throw me for a loop however... she did skin prick allergy testing for environmental allergens because Nathan has shown signs of being symptomatic with an EoE flare during high seasonal allergy times. She also tested peanut and soy since they showed up last time via skin prick testing (peanuts 5mm wheal) and IgE blood work (soy).<br />
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Today, the peanut was a whopping 47mm wheal! I was given a new Rx for 4 EpiPens and told to always have on within reach of Nathan. After his first allergy testing, I was concerned about peanuts, but not too worried because the reaction was mild and didn't require him to have an EpiPen according to Dr. Irani. Well now, there's no other word other than terrified to describe how I feel about this. I am so, so, thankful that Nathan doesn't attend daycare anymore even though they were peanut free. The only time he's out of our sight is when he's in Sunday school which, I'll have to learn to be okay with. He loves going, and so far they've been great about only giving him food we bring for him during snack time.<br />
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We've always been concerned about Nathan and food when he's been at daycare in the past, but felt like he was being watched over closely and taken good care of. There were two missteps in the weeks before we left the daycare, but they were honest and straightforward about what happened each time. I was thankful that they were just foods that trigger his EoE.<br />
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It's been almost two years since we learned of Nathan's diagnosis, and while we are used to the day to day, and meal to meal worries of living with a fear of food for our son. It never goes away completely. It's always there, food... you can't escape it. How can the very thing that's necessary for life cause you harm? It's mind boggling and until there's a cure it always will be.<br />
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Knowing food could damage Nathan's esophagus with his EoE was one thing, it concerns us, but we knew it wasn't immediately life-threatening. He'd just throw up for a few days, maybe refuse to eat for awhile, but we still had our Nathan and could remove the food and try something different. Now, it's a whole new concern over the possibility of a food taking his life.<br />
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<br />Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-4201505086050691132012-04-10T21:45:00.004-04:002012-04-10T21:47:11.999-04:00Eating Like There's No Tomorrow...<div style="text-align: justify;">
Nathan's been on his antibiotic for 8 days now. All of a sudden like a switch was flipped Nathan's appetite returned last night and it has continued throughout today! That boy has had more applesauce, chicken, and green beans today than I can keep cooked up and ready to serve just about! It's so puzzling because these are the same foods that he would look at the past couple of weeks and flat out refuse to eat! Not sure if his antibiotic is what's helped or not, his coughing at night seemed to go away the second night of being on it. I'm leaning more towards it being that the egg is finally out of his system. We'll just have to wait and see. We will do as the doctor ordered and continue the antibiotic for two more weeks and then re-trial the egg. Please continue to pray that his appetite stays so strong, there isn't much out there that gets me down in the dumps, but him not wanting to eat sure gets me there quickly! I feel like a victory has been won every meal he actually eats and it makes me so happy! (Even if it's the same three foods over and over again.) :o)<br />
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<br /></div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-16316955000445258702012-04-04T02:45:00.000-04:002012-04-04T02:45:02.219-04:00Three Weeks of Augmentin...<div style="text-align: justify;">
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So I called Dr. Williams last Friday morning, because I still hadn't heard anything about a new Rx for Nathan's nasal spray medication. He said that Dr. Irani wanted to see him and do a nasal smear before changing his medicine to determine if it were allergy or infection causing his sinus problems and coughing at night.</div>
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Dr. Irani, being the amazing doctor that she is had us come in right away on Friday and took care of it! It turns out that there were no allergy cells and plenty of infection cells. :o( This is good news because it means his Nasonex it still doing it's job! But it is confusing news, because we are now left to wonder if the eggs really were a problem, or if it was just a coincidence that he started coughing two days after starting them and that drainage from a sinus infection is to blame. She started him on a three week course of antibiotics to help clear his sinus infection, once it is gone she wants us to trial the eggs again.</div>
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I am apprehensive of trying them again just because of Nathan's terrible fit he threw the day I decided to stop the egg trial. He screamed as if I were trying to feed him poison when he saw the eggs that morning and didn't stop screaming until I threw them in the trash. To me, that says he knows they made his tummy hurt. </div>
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Along with Dr. Irani's advice, Mark and I did agree to trial egg again, this time only giving him things with eggs that are baked. Because of his limited food choices the simplest things I can come up with right now are meringue cookies and meatloaf without bread crumbs in it for him to trial. If they seem to do well, I'll consider making him a "safe" version of cookies or a cake with real egg in it, but for anyone who has ever tried baking with anything other than wheat flour and dairy, it's a whole lot of work! Nathan is totally worth the effort, but he can't live off of baked goodies for every meal, and I'd rather him have at least one more real "meal" option! He hasn't been in to his meats (chicken, pork, or beef) here lately so maybe this will be a way to get him to eat some.</div>
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Also, I forgot to mention in my last post about the appointment with Dr. Williams...</div>
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To add to the confusion with all this, Nathan was switched from Prevacid to Nexium by Dr. Williams' nurse practicioner (due to insurance issues... <strong>GRRR</strong>!) about two weeks before we started the egg trial. I told Dr. Williams that the NP wanted us to give him half of the 10mg packet so that's what we were doing. He said that Nathan needed the whole 10mg packet, we started that Thursday morning. Nathan's coughing was better that night and the same for Friday night. I didn't think anything of it until Saturday night... we had forgotten to give Nathan his Nexium that morning and he coughed all night. Sunday, I was sure to give it to him and again, he slept quietly Sunday night.</div>
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So this adds yet another variable to this crazy puzzle as to what the problem really was, I am praying it was the sinus infection and incorrect dose of Nexium causing the coughing and gagging, egg would be a huge food for Nathan to add to his "safe" list! So as with all things EoE, we'll just have to be <em>patient</em> and wait for these three weeks to move along and if his sinus infection clears, we will try the egg again.</div>
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<br /></div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-2010380527336105612012-03-30T11:38:00.000-04:002012-03-30T11:38:01.114-04:00Worth EVERY Minute...<iframe width="560" height="315" src="http://www.youtube.com/embed/rixyrCNVVGA" frameborder="0" allowfullscreen></iframe>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-86801550102892296562012-03-28T22:44:00.001-04:002012-03-28T22:44:45.998-04:00Appointment With Dr. Williams...<div style="text-align: justify;">
We saw Dr. Williams today for a routine GI check up, I was ever so thankful we had this appointment scheduled so long ago since Nathan has been having problems for the last two weeks. Ever since trialling eggs March 10 - March 20, Nathan has been coughing and gagging all night long and has lost his interest in food. Some days are good with his eating and some days not so much. A good day would consist of eating a pear or banana a few raisins, and 4-5 bites of chicken throughout the entire day plus drinking 15-20 ounces of his EleCare. A not so good day would consist of Nathan drinking 24 ounces of EleCare (which is only 50% of his daily calorie requirement), but picking at or flat out refusing any food presented to him.</div>
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So the plan right now is to switch nasal sprays (he's been on Nasonex since October 2011) and see if that helps. Dr. Williams is hoping that part of the problem is environmental allergies since they are so bad this time of year. He was supposed to contact Dr. Irani, Nathan's allergist to collaborate with her about which nasal spray to switch him to. I am hoping I get a call tomorrow that the decision has been made and I can go pick up his new Rx from the pharmacy.</div>
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We will then give it two weeks to see if Nathan's symptoms clear completely or greatly improve, if so we will continue on like we have been doing and move on to our next food trial, if not we will schedule a scope immediately and they will take a look and see what his esophagus looks like and do more biopsies. If we end up doing the scope and the biopsies come back with eosinophil counts I'm not sure what we'll do (well, I am, but I don't want to think about it... Nathan will be losing foods and it's not going to be easy on any of us). He's already so tired of eating the same foods day in and day out and so sad when he sees us or someone eating something that he can't have. I don't blame him, but how do you explain this to a two year old? We try, but he just doesn't understand right now. </div>
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I'll be sure to post an update once we know more... we are praying for good news! Thanks to everyone who continues to pray for Nathan and our family! </div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-26920792372100018132012-03-18T22:53:00.003-04:002012-03-18T22:55:56.419-04:00What a Year it's Been...So, I've been a terrible blogger since my post back in November. In fact, I've not been a blogger at all. The Thanksgiving, Christmas, & New Year holidays were wonderful to us! Blogging was an extremely therapeutic outlet for me in the beginning of Nathan's diagnosis and I guess it still could be if I would just do it, but my hands stumbled upon quilting and sewing last fall and they haven't stopped since they started. It's my new therapy and escape from dealing with all things food and EoE.
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Another reason for the lack of posts unfortunately, is the fact that Nathan has been doing so well! I am ashamed for not sharing good news with all my readers. We tried a few foods since my last post and some worked and some haven't. Wheat was Nathan's first fail and it devastated me. But I quickly remembered how blessed we were for going so long without a fail. Eggs are being trialled right now (we're on day 8) and there has been coughing and sneezing and a bit of a runny nose... typical fail signs, but we will continue on and see what happens. Has hasn't started refusing to eat them yet, so that's a positive sign. These days this lucky little guy is able to eat: chicken, pork, beef, apples, pears, green beans, carrots, raisins, potatoes, rice, marshmallows, and a variety of Enjoy Life cookies. We are beyond blessed for this! I know way too many other children out there with this that have fail, after fail, after fail, and have zero safe foods after months and years of trying to find one. My heart breaks for each of them. Nathan still has his feeding tube, but we only use it occasionally. He drinks 24 ounces of EleCare a day to supplement his nutrition. Typically he does great and gets it all in on his own, but there have been a few weeks he has not felt well due to a food or an illness and he looses interest in eating and drinking. So we increase the number of ounces of EleCare during those times and hook him up to his feeding pump while he sleeps to keep his calories consistent. We are so thankful for the peace of mind his tube give us when he doesn't feel like eating. </div>
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I can't believe it's been almost ONE year since we got that phone call from Dr. Williams on Friday, March 24, 2011, at 1:30pm. Yes, I still remember the exact time of that life changing phone call. It has certainly been a year of ups and downs full of unexpected twists and turns. But it has been wonderful all at the same time thanks to the many friends we have made along the way from around the country! We have become especially close to a family in Arizona and now consider them quite literally "family"!<br />
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Nathan and I flew out to meet our new found "family" and visit with their precious Tyler (Nathan's EoE buddy) and their five other kids the first week in February this year! It was as if we were visiting with old friends, we had an amazing time with them! We are so gracious for their love and support for our family. They have made the last 12 months so much easier for us than they would have been without them! It makes all the difference in the world to be able to talk to someone else who walks in the same shoes you do.<br />
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<tr><td class="tr-caption" style="text-align: center;">(EleCare) Drinking buddies.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-yGNJ817tBUU/T2aeQ4P-HHI/AAAAAAAAAeI/vDAVrXL7TmE/s1600/429802_10100761396123542_68133975_51033746_1353564650_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-yGNJ817tBUU/T2aeQ4P-HHI/AAAAAAAAAeI/vDAVrXL7TmE/s320/429802_10100761396123542_68133975_51033746_1353564650_n.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hiking buddies.</td></tr>
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Most days are good days for us all, Nathan has a hard time understanding why he can't eat things that we or other "normal" people eat from time-to-time. It's hurts me terribly to tell him no. But typically I am armed with safe foods for him to try and divert his attention. Last week Nathan's daycare had a class party for St. Patrick's Day. I thought it would have been done and over with before we arrived that afternoon, but it was just beginning as we got there. It was the first time I wasn't prepared with food for Nathan and it was terrible! All of his classmates greeted him by running up to him and telling them about all the green cookies and cupcakes. It took all I had not to grab him and run out of there and head back home. The two year olds in his class meant no harm, and Nathan didn't seem phased, but it made me realize that as this does get easier to get used to living with, it still has a horrible way of sneaking up on me at times and it makes me want to scream! I despise the fact that life revolves around food. I was in a funk the remainder of the evening at work because of how terrible I felt for not having a fun food for Nathan at his class party. I felt like I let Nathan down, and it was a rotten feeling. A radiologist I work with came into the department that night upset over how he and his wife just discovered that their three year old had a skin reaction to peanuts. He was devastated at how they had to rearrange their grocery shopping and all the snack foods that they have in their house. He went on and on about how it's just not fair for a three year old to be on such a restricted diet by avoiding peanuts. I just sat there in silence and actually had to get up and leave the department. Honestly, I do feel terrible for them and I know it stinks. Food allergies are inconvenient and worse, terrifying if they are life threatening. But that wasn't the night for my sympathy. Typically, I would have handled the situation much better and it wouldn't have gotten to me like it did, but it was just one of my not so good days I guess. Thankfully I don't have many of them like that.</div>
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Below are some more photos to catch you up on the last few months. Enjoy!</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/--jVZFhnctgo/T2aScYg2MZI/AAAAAAAAAcY/LXb5rttLpkU/s1600/IMG_6819.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/--jVZFhnctgo/T2aScYg2MZI/AAAAAAAAAcY/LXb5rttLpkU/s320/IMG_6819.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nathan's first snow (that he was old enough to play in)!<br />
We kept him up past his bedtime to play in it!</td></tr>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-lnJpJL3E1MI/T2aS35LMDmI/AAAAAAAAAdI/BsVNaiwoMv0/s1600/Image.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-lnJpJL3E1MI/T2aS35LMDmI/AAAAAAAAAdI/BsVNaiwoMv0/s320/Image.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nathan holding his new best friend, Sterling.</td></tr>
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<div style="text-align: center;">
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-uYwnJuaS6mc/T2aSiQ17HqI/AAAAAAAAAcg/VLWHQu-EHYU/s1600/417364_10100859721488722_68133975_51345717_517118978_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-uYwnJuaS6mc/T2aSiQ17HqI/AAAAAAAAAcg/VLWHQu-EHYU/s320/417364_10100859721488722_68133975_51345717_517118978_n.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nathan and his Mini Buddy, BearBear! He has a<br />
feeding tube in his tummy just like Nathan!</td></tr>
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<tr><td style="text-align: center;"><br />
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<div style="text-align: left;">
<a href="http://3.bp.blogspot.com/-QTVPjHFxE5s/T2aUP3MxIAI/AAAAAAAAAdw/hBjOqKQ00iU/s1600/DSC03736.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-QTVPjHFxE5s/T2aUP3MxIAI/AAAAAAAAAdw/hBjOqKQ00iU/s320/DSC03736.JPG" width="213" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Nathan clapping after we sang "Happy Birthday!"<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-48waPzw4Cv8/T2aUSYL0B-I/AAAAAAAAAd4/NCTUhbRn2ZU/s1600/IMG_7018.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-48waPzw4Cv8/T2aUSYL0B-I/AAAAAAAAAd4/NCTUhbRn2ZU/s320/IMG_7018.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nathan's dairy free, wheat free,<br />
soy free, egg free birthday cake!</td></tr>
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<div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-rqrKr-mVJ4c/T2aSvCYEOEI/AAAAAAAAAco/Bd0ceSLbn4M/s1600/IMG_7261.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-rqrKr-mVJ4c/T2aSvCYEOEI/AAAAAAAAAco/Bd0ceSLbn4M/s320/IMG_7261.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nathan's birthday airplane! He had a blast flying it!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-yKaTRfxvUpg/T2aSzK46BaI/AAAAAAAAAcw/4XOLB1VOkGg/s1600/IMG_7322.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-yKaTRfxvUpg/T2aSzK46BaI/AAAAAAAAAcw/4XOLB1VOkGg/s320/IMG_7322.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking a break from flying!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-SfK_PdZRqDw/T2aS2XDUF7I/AAAAAAAAAc4/V8UnNF8O8_w/s1600/IMG_7417.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://1.bp.blogspot.com/-SfK_PdZRqDw/T2aS2XDUF7I/AAAAAAAAAc4/V8UnNF8O8_w/s320/IMG_7417.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peek-a-boo!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-SrcS8ucoHfQ/T2aS7MXwODI/AAAAAAAAAdQ/_q-3gpSXo_I/s1600/IMG_7478.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-SrcS8ucoHfQ/T2aS7MXwODI/AAAAAAAAAdQ/_q-3gpSXo_I/s320/IMG_7478.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feeding the goats at Maymont.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-aeiHdr0KbnU/T2aTBF6MxYI/AAAAAAAAAdY/j4fYRyPiBQA/s1600/IMG_0100.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-aeiHdr0KbnU/T2aTBF6MxYI/AAAAAAAAAdY/j4fYRyPiBQA/s320/IMG_0100.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Such a big boy!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-V4ItDgNAza0/T2aS2zZ-PoI/AAAAAAAAAc8/JcqOeF_SdLc/s1600/424097_10100862642739512_68133975_51360148_1487264891_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="http://2.bp.blogspot.com/-V4ItDgNAza0/T2aS2zZ-PoI/AAAAAAAAAc8/JcqOeF_SdLc/s320/424097_10100862642739512_68133975_51360148_1487264891_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brushing his teeth and being silly!</td></tr>
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</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-13007078095274776992012-02-21T02:32:00.000-05:002012-03-24T02:33:52.091-04:00Nathan's 2nd Birthday!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-U3NuzsJcKa8/T21nog-17EI/AAAAAAAAAeo/DfUpTHveGnM/s1600/IMG_6944.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="196" src="http://4.bp.blogspot.com/-U3NuzsJcKa8/T21nog-17EI/AAAAAAAAAeo/DfUpTHveGnM/s320/IMG_6944.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ingredients</td></tr>
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Just wanted to share the recipes I used to make Nathan's safe birthday cake and cookies this year! They're free of all the top 8 allergens and were pretty good! I might try switching up some of the "flours" in the future to see if I can make it even better! The sugar cookie recipe was a hit and everyone loved them! So thankful to have alternative options for baking for our sweet boy who deserves a yummy treat like these from time to time! :o) All recipes are from <a href="http://www.eatingwithfoodallergies.com/" target="_blank">www.eatingwithfoodallergies.com</a>.</div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: justify;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-eF_-M4w2va0/T21nsTOY_CI/AAAAAAAAAew/N0LRYnARCHg/s1600/IMG_6997.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="133" src="http://2.bp.blogspot.com/-eF_-M4w2va0/T21nsTOY_CI/AAAAAAAAAew/N0LRYnARCHg/s200/IMG_6997.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Test cookie was a success! Check out that smile!</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-zRzxcTNCtLk/T21nzCoN7lI/AAAAAAAAAfA/RjfpBFpbQUQ/s1600/IMG_7014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="120" src="http://2.bp.blogspot.com/-zRzxcTNCtLk/T21nzCoN7lI/AAAAAAAAAfA/RjfpBFpbQUQ/s200/IMG_7014.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Mickey & gang toppers made the cake!</td></tr>
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<span class="Apple-style-span" style="font-family: 'Times New Roman', Times, serif; font-size: large;"><u><a href="http://www.eatingwithfoodallergies.com/wheatfreesugarcookies.html" target="_blank">Wheat Free Sugar Cookies</a></u></span></h1>
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<span style="color: black; font-family: 'Times New Roman', Times, serif;">Ingredients:</span></div>
<div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 13px;">
1/2 c. butter or "safe" margarine <b>(I used Earth Balance dairy-free, soy-free butter)</b><br />
1/2 c. "safe" shortening <b>(I used Spectrum Organic Butter Flavor palm oil shortening)</b><br />
3/4 c. sugar<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: justify;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-2MXoIbQerpo/T21nwfrqgtI/AAAAAAAAAe4/knFrcm8BFww/s1600/IMG_7008.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="212" src="http://2.bp.blogspot.com/-2MXoIbQerpo/T21nwfrqgtI/AAAAAAAAAe4/knFrcm8BFww/s320/IMG_7008.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Iced and ready to go!</td></tr>
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1 T. egg replacer + 2 T. warm water, whisk together until fluffy<br />
1 tsp. vanilla<br />
1 T. soy or rice milk <b>(I used Rice Dream Vanilla Rice Milk)</b><br />
2 c. <a #"apflour"="" href="http://www.eatingwithfoodallergies.com/wheatsubstitutes.html">wheat-free all-purpose flour mix</a><br />
1 tsp. <a href="http://www.glutenfreemall.com/catalog/product_info.php?ref=166&products_id=13&affiliate_banner_id=1" target="_blank">xanthan gum</a><br />
2 tsp. baking powder<br />
1/4 tsp. salt<br />
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<span style="color: black; font-family: 'Times New Roman', Times, serif;">Directions:</span><br />
1) Preheat oven to 375 degrees</div>
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2) Combine butter or margarine, shortening and sugar in mixer until creamy; mix in egg replacer, vanilla and milk. In a separate bowl, combine flour, xanthan gum, baking powder and salt. Gradually add flour mixture to the margarine mixture until combined. Cover dough and refrigerate for 1 hour.</div>
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3) Remove dough from refrigerator and divide in half. Put half of the dough back in the refrigerator. Place the other half of the dough on a floured surface (rice flour works well). Cover it with a piece of plastic wrap to prevent it from sticking to the rolling pin. Roll it out to about 1/4 inch thickness. Cut out shapes using cookie cutters. Use a small turner or spatula to transfer cut-outs to an ungreased cookie sheet. Repeat with remaining dough.</div>
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4) Bake at 375 for 6-8 minutes. Edges should be firm but not browned. Remove from cookie sheet and transfer to cooling racks.</div>
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<h1 style="text-align: center;">
<span class="Apple-style-span" style="font-family: 'Times New Roman', Times, serif; font-size: large;"><u><a href="http://www.eatingwithfoodallergies.com/allergyfreebirthdaycake.html" target="_blank">Allergy Free Birthday Cake</a></u></span></h1>
<div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 13px;">
<span style="color: black; font-family: 'Times New Roman', Times, serif;">Ingredients:</span><br />
<a href="http://3.bp.blogspot.com/-DJRwreWK1VA/T21n1yEXbUI/AAAAAAAAAfI/nPwn-x-H-_0/s1600/IMG_7018.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-DJRwreWK1VA/T21n1yEXbUI/AAAAAAAAAfI/nPwn-x-H-_0/s320/IMG_7018.jpg" width="212" /></a>1 cup white rice flour<br />
1/3 cup potato starch<br />
3 tablespoons tapioca starch<br />
1/2 teaspoon <a href="http://www.glutenfreemall.com/catalog/product_info.php?ref=166&products_id=13&affiliate_banner_id=1" target="_blank">xanthan gum</a><br />
1 cup sugar<br />
1/4 cup cocoa powder<br />
1/2 teaspoon salt<br />
1 teaspoon baking soda<br />
1 teaspoon pure vanilla extract<br />
1 tablespoon vinegar (any variety will do)<br />
5 tablespoons canola oil<br />
1-1/4 cup cold water<br />
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<span style="color: black; font-family: 'Times New Roman', Times, serif;">Directions:</span><br />
1) Preheat oven to 350 degrees.</div>
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2) Combine the rice flour, potato starch, tapioca starch, xanthan gum, sugar, cocoa powder, salt and baking soda in a mixing bowl. Add the vanilla extract, vinegar, canola oil and water. Mix well.</div>
<div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 13px;">
3) For cake: Pour batter into an ungreased square cake pan. Bake at 350 degrees for 30-35 minutes or until a toothpick inserted in the middle comes out clean.</div>
<div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 13px;">
For cupcakes: Pour batter into a muffin tin with paper liners. Bake at 350 degrees for 20-25 minutes or until a toothpick inserted in the middle of a cupcake comes out clean. Remove from the pan immediately and place on a cooling rack. Makes 12 cupcakes.</div>
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<b><span class="Apple-style-span" style="font-weight: normal;"></span></b><br />
<h1 style="text-align: center;">
<b><span style="color: black; font-family: 'Times New Roman', Times, serif;"><a href="http://www.blogger.com/blogger.g?blogID=5100005378376291229" name="#"sugarcookiefrosting"">Sugar Cookie Frosting</a></span></b></h1>
<b>I liked this frosting so much I used it for both the cookies and the cake! Just added a bit more rice milk for the cake so it would stay softer)</b><br />
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<span style="color: black; font-family: 'Times New Roman', Times, serif;">Ingredients:</span>4 cups powdered sugar, sifted<br />
1/3 cup shortening <b>(I used Spectrum Organic Butter Flavor palm oil shortening)</b><br />
4 tablespoons soy or rice milk <b>(I used Rice Dream Vanilla Rice Milk)</b><br />
1 teaspoon vanilla extract<br />
<br />
<span style="color: black; font-family: 'Times New Roman', Times, serif;">Directions:</span>1) In large bowl, combine the sugar and shortening until creamy. Mix in milk and vanilla until combined well.<br />
2) If desired, divide frosting into bowls and add your choice of food coloring for decorating.</div>
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<br />Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-12627782525511910812011-11-07T19:20:00.002-05:002011-11-07T19:20:58.259-05:00G-Tube Switch Out...Much excitement came with Nathan getting his AMT Mini One Balloon Button back in August.<div>
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But there was one thing I was dreading...</div>
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The responsibility of changing it every three months, by myself, at home. I became a pro at the NG tube and that didn't phase me a bit. This seemed different to me because of the fact there would be an open hole in Nathan's tummy. I realized that it would be a "healed" tract from the outside directly into his stomach, but some part of me couldn't shake the thought of his insides falling out once I removed his old tube. Impossible I know, but I couldn't help but think of it. Ridiculous me.</div>
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Thanks to my dear friend Katie, Nathan's tube switch out was a breeze today. It was done and over with in less than a minute! Nathan cried a bit when I pulled out his old tube, the balloon deflated a bit unevenly and there was a slight resistance when I took it out. I don't know what, if anything, I could do differently next time to help make that easier. It wasn't horrible, keep in mind. I waited for Nathan to calm down so that his stomach muscles would relax enough to allow me to easily slide the new tube in. In it went and I inflated the balloon with saline and we were all finished! I feel confident that the next go round I could even do it alone with Nathan.</div>
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Thanks again Katie for getting excited about things like this and being so willing to offer your assistance! </div>
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Our sweet boy makes us prouder and prouder every day! I am amazed at how tough he is!</div>
</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com1tag:blogger.com,1999:blog-5100005378376291229.post-62566643980125853852011-11-05T19:34:00.001-04:002011-11-05T19:34:32.576-04:00Boy Will Be Boys...<div style="text-align: justify;">
We had a fun afternoon with our good friends Anne and Justin at the Brunswick Stew Festival today!</div>
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<tr><td class="tr-caption" style="text-align: center;">Nathan found some rocks to play with!<br />Ah... boys!</td></tr>
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We were all looking forward to nap time once we got home. Nathan had other plans... he was walking quickly with his sippy cup and tripped over something and fell. His head hit the rim of the cup making a fairly deep gash through his left eyebrow. We got the bleeding under control and hopped in the car and headed straight to Kid Med. Nathan was such a trooper, while waiting to be called back to see the doctor, Nathan was running around the waiting room and trying to climb in chairs and hop out of them. I tried my best to get him to sit still, but he isn't a sit still kind of boy.</div>
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Nathan got 5 stitches and was super brave getting them! He only cried when they wrapped him up to keep him still and then again when they were injecting the numbing medicine. Once that took affect, he was calm and did great! He actually fell asleep in the 5 minutes it took to place all of the stitches! I love our brave Nathan! He gave the doctor a high five on the way out the door! I guess that was his way of saying, "Thank you!"</div>
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The doctor said that Nathan's eye will likely be swollen shut by tomorrow morning, which I can already see beginning to happen. Bless his heart. We will return in 7 days to have the stitches taken out... that should be fun. I know it wont hurt him, but I'm sure it's going to bring back terrible memories for little Nathan. But like getting them, he won't remember that either one day. :o) The next time Nathan wants to skip nap time I hope he chooses a little less exciting way! </div>
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<tr><td class="tr-caption" style="text-align: center;">Nathan's self-portrait in the car on the way to Kid Med.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Opening wide to put that binky in!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Still smiling!</td></tr>
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<span class="Apple-style-span" style="color: #b45f06; font-family: Times, 'Times New Roman', serif; font-size: large;"><i>Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.</i></span></div>
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<br /></div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com3tag:blogger.com,1999:blog-5100005378376291229.post-45934092080276417002011-11-04T13:12:00.002-04:002011-11-04T13:12:55.154-04:00What Nathan's Been Up To...<b>I promised pictures would come soon in my last post, so here they are! Enjoy!</b><br />
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These are from our beach vacation this past September:<br />
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<tr><td class="tr-caption" style="text-align: center;">Hanging out at the pool at the beach house !</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Checking out the wild horses on the beach!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sandy hands :o)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">What's this gritty stuff mama?</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Happy Nathan LOVED the beach!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Pontoon Captains! This was Nathan's first time on a boat!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hanging out with daddy watching Mickey Mouse!</td></tr>
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The weather was just beautiful on October 8th, I took Nathan down to the lake with his big truck! He had a blast pushing his truck around on the dock!</div>
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These were taken at the State Fair of Virginia in October:<br />
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<tr><td class="tr-caption" style="text-align: center;">Country boy Nathan.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nathan LOVED all of the tractors!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Auntie Anne was making Nathan giggle!</td></tr>
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Nathan and mommy playing at the house:<br />
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<tr><td class="tr-caption" style="text-align: center;">Nathan had just finished eating a banana... it was his first real food in several days, because he wasn't feeling well. This was a week and a half after we started him back on the Pulmicort slurry. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Playing in a toy box!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">CHEESE!</td></tr>
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Nathan dressed up as his favorite character, Mickey Mouse! Nathan had a great time at the Trunk or Treat at River Road Church!<br /><div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Bean bag toss! Go Mickey!</td></tr>
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Mark has wanted a Radio Flyer for Nathan ever since the day Nathan was born. :o) We were shopping at Target last weekend and it was on a sale we couldn't say no to! Nathan was with us but wasn't paying to much attention to the big box and what was inside. That night after we put him to bed we put the wagon together so that he could be surprised in the morning! Needless to say he was super excited when he came downstairs to find his first wagon! We of course, had to test it out right away. It was a chilly morning, but we all bundled up and had a great stroll!</div>
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<tr><td class="tr-caption" style="text-align: center;">Big boy Nathan pulling the wagon like daddy!</td></tr>
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</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-63623898525745251872011-10-28T14:09:00.001-04:002011-11-04T13:14:02.285-04:00Playing Catch Up...Alright, so in the world of EoE as we have always known, things can change and they can change quickly. We were blessed to have such a smooth couple of months in a row with Nathan.<br />
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Shortly after my last post, which was on September 1, Nathan began coughing and lost his appetite. At first we chalked it up to being a cold, but when 4 weeks had gone by and it wasn't improving, so I decided to give Nathan's GI doctor a call. He suggested that we start Nathan back on the Pulmicort slurry once a day. This was a bit upsetting considering that he had been off it for nearly 12 weeks at this point and had been doing great until now. I knew that there was a chance that he would need to go back on it, but had been so hopeful that avoiding the top 8 allergens would be all the treatment he would need.<br />
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It's a hard choice to make, either take away all of Nathan's food and feed him his EleCare formula only and stay off of the steroid, or put him back on the steroid so that he can have a handful of foods that he can eat without a reaction. Mark and I discussed it and we do want Nathan to eat food, so we are continuing with the steroid for now, although, it's such a frustrating feeling. I hate the thought that we may still be feeding Nathan foods that are hurting him, yet this steroid acts as a "band-aid" and keeps the inflammation down and symptoms at bay. But the thought of taking his food away from him again, is heartbreaking as well. Nathan LOVES to eat!<br />
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Nathan has been back on the steroid since October 5, his appetite returned after being on it for about 2 weeks, but his coughing has continued. It's not as bad as it once was, but it's still there. On October 19, I took Nathan in for his 18 month well visit ( 2 months late :o/ ) and Dr. Terry said that he heard a slight wheeze when listening to his lungs, so we started doing a combination of Xopenex and Pulmicort nebulizer breathing treatments with him once a day since then. This has helped with his cough a bit, but it's all too much of a reminder of his chronic cough that he had before we had a diagnosis for him. So I am still worried that the Pulmicort steroid isn't quite doing the trick and something is still irritating him.<br />
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We have a follow up appointment with Dr. Williams on December 2 and I am imagining that if his coughing is still present we will be scheduling yet another scope and biopsy to see what things look like in his esophagus. Before I get too carried away with the what-if of what all that could tell us I will just be patient and wait for the appointment to see what Dr. Williams thinks.<br />
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Yesterday we finally had our Feeding Therapy evaluation appointment for Nathan at the Children's Hospital. It was a long 3.5 hour appointment, but we feel it was very informative. We met with a Nutritionist, Dietitian, Psychologist, Feeding/Speech Therapist, and their Nurse Practitioner. It was nothing short of overwhelming, but we felt that they truly have Nathan's best interest in mind and they also are very familiar with Eosinophilic Esophagitis, which makes me so happy! They all evaluated Nathan together and individually so that they could put their minds together on the best approach to help Nathan.<br />
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They determined that he has a very weak jaw and tongue, which is causing him to fatigue easily during meals, and stop chewing his food and start swallowing it whole. This is why Nathan chokes so easily on foods that we do not cut into small enough pieces. We have been shown some chewing exercises to work on with Nathan to help him get stronger and learn to chew with his back teeth, right now he uses his front teeth to chew and his tongue to mash food up on the roof of his mouth. We are hopeful that these exercises will help him become stronger so that he can chew food correctly. Along with the chewing exercises, we are to offer Nathan table food in small pieces first at meals, and as he shows signs of fatigue, take the table food away from him and offer pureed foods to him. They want us to do a minimum of 6 ounces of pureed food a day right now, while removing 6 ounces of his EleCare volume for the day. The goal is to get Nathan to get his calories and nutrition from food and not formula, it will be a slow process, but any progress is good progress with that. This is an exciting thought, as I had no idea when this time would come for us to try this, but at the same time it's scary because we know that if we need to remove food from his diet again due to high eosinophil counts on a biopsy, we will need to rely on the formula again for his nutrition. For this reason, we are certainly not finished with his g-tube, and that will remain in place for times when it's needed. We do not want to go through that surgery again!<br />
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<tr><td class="tr-caption" style="text-align: center;">Nathan working on his chewing exercises.</td></tr>
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Unfortunately, the waiting list for weekly feeding therapy is 6-9 months from now. Mark and I will work with Nathan daily doing these chewing exercises 3 times a day before meals, until we can get him in to the weekly program at the Children's Hospital . They are also having the Early Intervention program for our state contact us, as they may be able to come to our home and begin working with Nathan now, instead of waiting 6-9 more months. We are praying that this will work out and be a good starting point in getting Nathan's chewing to improve.<br />
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Another concern is his speech, which they think is attributed to his weak jaw and tongue as well. Nathan's mouth and tongue can't do what they need to do to make the proper sounds to say some words correctly. They think these same exercises will improve this as well.<br />
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I apologize for the lack of posts here lately, I will work on keeping things more up to date on the blog. It's much easier for me to post as we go than to try to squeeze so much information into one post like I have done today.<br />
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We are headed to Mark's parent's church annual Trunk or Treat tonight, Nathan will be going as Mickey Mouse! I will be sure to post pictures in the next day or two!Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-77841557016239965532011-09-01T00:27:00.000-04:002011-09-01T00:27:54.612-04:00Results Are In...<div style="text-align: justify;"><b>Nathan's last scope biopsy results are in: <span class="Apple-style-span" style="color: red; font-size: large;"><i><u>ZERO</u></i></span></b><b> eosinophils!!!</b></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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 <a href="http://www.tylercwithee.blogspot.com/">here</a>. 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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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! </div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com4tag:blogger.com,1999:blog-5100005378376291229.post-64521868369681476172011-08-17T23:32:00.002-04:002011-08-21T05:53:59.768-04:00Trooper Nathan...<div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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! </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"> 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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here are some photos from our day, enjoy!</div><div style="text-align: justify;"><br />
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<tr><td class="tr-caption" style="text-align: center;">Such a patient patient, waiting to be called back.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sleepy Nathan in the recovery room.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Buckled in and ready to head home.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nathan's new tummy!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nathan checking it out for the first time.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All hooked up for his first feed! It went great!</td></tr>
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</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-44824663323328884632011-07-31T16:46:00.000-04:002011-07-31T16:46:52.102-04:00No 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.<br />
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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.<br />
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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.<br />
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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!<br />
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<tr><td class="tr-caption" style="text-align: center;">Nathan sleeping with his big boy pillow!</td></tr>
</tbody></table>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com0tag:blogger.com,1999:blog-5100005378376291229.post-14555255798152761692011-07-17T22:48:00.000-04:002011-07-17T22:48:42.566-04:00We're Still Here...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Our little family! </td></tr>
</tbody></table><div style="text-align: justify;">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!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br />
</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-vp0y0lIuZ5g/TiObHs_URkI/AAAAAAAAAUI/XiAkK994M8c/s1600/IMG_4529+FINAL.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://4.bp.blogspot.com/-vp0y0lIuZ5g/TiObHs_URkI/AAAAAAAAAUI/XiAkK994M8c/s320/IMG_4529+FINAL.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mark and Nathan</td></tr>
</tbody></table><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-PuF5bkP8Nkc/TiObto_8ZMI/AAAAAAAAAUM/XizYVC5OXB4/s1600/IMG_4489+FINAL.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-PuF5bkP8Nkc/TiObto_8ZMI/AAAAAAAAAUM/XizYVC5OXB4/s320/IMG_4489+FINAL.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kill Devil Hills, Outer Banks, NC</td></tr>
</tbody></table><div style="text-align: justify;">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 </div><div style="text-align: justify;"><br />
</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-SmA-BlVuJMc/TiOb0IrlhGI/AAAAAAAAAUU/ovtpb_iRx10/s1600/IMG_4548+FINAL.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-SmA-BlVuJMc/TiOb0IrlhGI/AAAAAAAAAUU/ovtpb_iRx10/s320/IMG_4548+FINAL.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dana and Nathan</td></tr>
</tbody></table><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-NxAHpbR2COQ/TiOeH1vt0wI/AAAAAAAAAUg/dL8UCeuMyxA/s1600/IMG_4628+final.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-NxAHpbR2COQ/TiOeH1vt0wI/AAAAAAAAAUg/dL8UCeuMyxA/s320/IMG_4628+final.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beach bum Nathan</td></tr>
</tbody></table><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-2iT0QL-YTXs/TiOb48t1DHI/AAAAAAAAAUc/pPhH2xSpKwk/s1600/IMG_4586+FINAL.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-2iT0QL-YTXs/TiOb48t1DHI/AAAAAAAAAUc/pPhH2xSpKwk/s320/IMG_4586+FINAL.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy's boy!</td></tr>
</tbody></table><div style="text-align: justify;"><br />
</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com3tag:blogger.com,1999:blog-5100005378376291229.post-7209940238928413112011-07-06T00:31:00.000-04:002011-07-06T00:31:00.197-04:00G-tube Follow Up Appointment & The 4th of July...<div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><tbody>
<tr><td style="text-align: center;"><img height="240" src="http://2.bp.blogspot.com/-EBKydHKUk4w/TbRgdAtq4vI/AAAAAAAAC-g/sTixeu3yDBY/s320/DSC00635.JPG" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">AMT Mini One button</td></tr>
</tbody></table><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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! </div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-yjJMFQ9Fbf4/ThPjkeYMDzI/AAAAAAAAATg/RV88oa5UKMw/s1600/IMG_4311+FINAL.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="http://1.bp.blogspot.com/-yjJMFQ9Fbf4/ThPjkeYMDzI/AAAAAAAAATg/RV88oa5UKMw/s400/IMG_4311+FINAL.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">OooOOooo... check that out!</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-0BowVgTBki4/ThPjmJnRC-I/AAAAAAAAATk/FMFxqggrfuc/s1600/IMG_4312+FINAL.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="http://1.bp.blogspot.com/-0BowVgTBki4/ThPjmJnRC-I/AAAAAAAAATk/FMFxqggrfuc/s400/IMG_4312+FINAL.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging in the pool!</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-1_DYIph5J-4/ThPjnNAkrRI/AAAAAAAAATo/hAQJour4ADE/s1600/IMG_4324+FINAL.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="http://1.bp.blogspot.com/-1_DYIph5J-4/ThPjnNAkrRI/AAAAAAAAATo/hAQJour4ADE/s400/IMG_4324+FINAL.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cooling off with some water! </td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-oBH9kY8Ma30/ThPjpXZ7_iI/AAAAAAAAATs/SNU3R58y-qQ/s1600/IMG_4335+FINAL.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://1.bp.blogspot.com/-oBH9kY8Ma30/ThPjpXZ7_iI/AAAAAAAAATs/SNU3R58y-qQ/s400/IMG_4335+FINAL.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thinking about getting out...<br />
just to want back in 30 seconds later</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-f3YHVbkmzLY/ThPjr5Z3vrI/AAAAAAAAATw/w9fZN0LF8G4/s1600/IMG_4344+FINAL.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://1.bp.blogspot.com/-f3YHVbkmzLY/ThPjr5Z3vrI/AAAAAAAAATw/w9fZN0LF8G4/s400/IMG_4344+FINAL.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drinking water from Auntie A's cup!</td></tr>
</tbody></table><div style="text-align: justify;"><br />
</div><div class="separator" style="clear: both; text-align: center;"></div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com1tag:blogger.com,1999:blog-5100005378376291229.post-61080949506105498722011-06-30T11:55:00.001-04:002011-06-30T12:15:24.918-04:00Quick Update...<div style="text-align: justify;">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!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-bottom: 0.5em; padding-bottom: 6px; padding-left: 6px; padding-right: 6px; padding-top: 6px; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-NwWClauqEgA/TgyfDdtrc5I/AAAAAAAAATc/hyhpiadWfFU/s1600/%2521cid__0629111221.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://2.bp.blogspot.com/-NwWClauqEgA/TgyfDdtrc5I/AAAAAAAAATc/hyhpiadWfFU/s320/%2521cid__0629111221.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; padding-top: 4px; text-align: center;">We found it at Target Pharmacy... it's OTC<br />
but you have to ask the pharmacy for it!</td></tr>
</tbody></table>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.<br />
<br />
</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-BBHObwYS52Y/TgybCt-sbXI/AAAAAAAAATY/39lfU0Uacic/s1600/%2521cid__0629111634.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-BBHObwYS52Y/TgybCt-sbXI/AAAAAAAAATY/39lfU0Uacic/s320/%2521cid__0629111634.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yummy carrots! Thank you Gigi!</td></tr>
</tbody></table><div style="text-align: justify;">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! </div><div style="text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><br />
</div><br />
</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com2tag:blogger.com,1999:blog-5100005378376291229.post-2542070783102794752011-06-21T00:22:00.001-04:002011-06-21T00:32:14.627-04:00Biopsy Results Are In...<div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here he is this morning checking out his new tube:</div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/--6ywnSf9b1U/TgAbzDBuGRI/AAAAAAAAATM/4Ms2F0GsvDQ/s1600/IMG_4062.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="400" src="http://4.bp.blogspot.com/--6ywnSf9b1U/TgAbzDBuGRI/AAAAAAAAATM/4Ms2F0GsvDQ/s400/IMG_4062.JPG" width="266" /></a></div><div style="text-align: justify;"> <a href="http://3.bp.blogspot.com/-WHVIi3XDRBo/TgAb2QHXloI/AAAAAAAAATQ/vQi_dEJuPKQ/s1600/IMG_4067.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-WHVIi3XDRBo/TgAb2QHXloI/AAAAAAAAATQ/vQi_dEJuPKQ/s400/IMG_4067.JPG" width="266" /></a></div><div style="text-align: justify;"><br />
</div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com4tag:blogger.com,1999:blog-5100005378376291229.post-43940545633421193672011-06-19T22:39:00.001-04:002011-06-19T23:21:06.323-04:00Nathan's Home...<div style="text-align: center;"><div style="text-align: justify;">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.</div></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: justify;"><tbody>
<tr><td style="text-align: center;"><a href="http://benik.com/images/peds/g-tube_access.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://benik.com/images/peds/g-tube_access.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Benik G-tube Protector Belt</td></tr>
</tbody></table><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br />
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</div><div style="text-align: center;"><object height="224" width="400"><param name="allowfullscreen" value="true" /><param name="movie" value="http://www.facebook.com/v/10100264632516792" /><embed src="http://www.facebook.com/v/10100264632516792" type="application/x-shockwave-flash" allowfullscreen="true" width="400" height="224"></embed></object></div>Nathan's Mommyhttp://www.blogger.com/profile/06846410600019242457noreply@blogger.com3