We're Ba-ack!

Driving in to Fort Worth a few weeks ago for the kids' procedures was like deja vu. Two trips in two weeks.... Our days, our appointments... they all seemed to just run together. Even though we were exhausted, it was also a relief to be there, having tests run again on both kids and having procedures done, all with hopes of getting answers.

This was eighth set of scope and biopsies. They've become fairly routine. Every few months, we introduce new foods, and then follow up with scopes and biopsies to see if there are any eosinophils (evidence of a reaction to what he has been eating). This go-round, we did not introduce any new foods. In the past, Eli had been find with eating blue berries. Then, one day, he came to us and said that he did not want to eat them anymore. This was probably around October 2013. And this was a first. I don't remember him ever coming to us like this before. He told us that blue berries hurt and he did not want to eat them anymore. Eli was almost 5 at the time and, in our opinions, old enough to tell us when something was going on. So, we removed blue berries from his diet. (We do occasionally offer them to him, but he still refuses them.) Even though we removed the blue berries, we continued to see signs that Eli was having a flare. He had a horrible cough. He had dark "allergy shiners" that teachers, therapists, etc. were noticing and commenting on. His eczema was horrible on his legs and hands. We just weren't comfortable with introducing a new food to his diet while he was having all these symptoms.

So, on Wednesday, March 5, Eli went in for Scope and Biopsy #8. The results: no eosinophils, but esophagitis. This basically means that he has inflammation and irritation in his esophagus. He also had yet another yeast infection in his esophagus. So he was prescribed a 21-day round of steroids for that. Also, while talking to all the nurses, doctors and anesthesiologists before the procedure, we discovered that Eli had actually had an anaphylactic reaction to a medication when he had his procedure in August 2012. After that particular procedure, Eli's face and neck/throat were very swollen and he had coughed so hard, he popped the blood vessels in his face. At this procedure in march, the anesthesiologist discovered that they had accidentally used a medication with egg, causing the anaphylactic reaction. We're just grateful we were at this particular hospital, where they were able to handle the reaction appropriately.

(This photo is from the procedure in August 2013, that shows the visible effects of the anaphylactic reaction Eli had.)

The yeast infections seem to be caused by Eli being on too many antibiotics. With Eli's compromised immune system, Eli gets sick very often and very easily. I should probably go back to the week between the appointments and procedures....


After returning to Lubbock after the kid's appointments and preparing to return to Fort Worth for procedures, both kids seemed to have colds. I HAD to have them well for their procedures the following week. So, I took them to their pediatrician, fully expecting it to be allergies or a mild cold. They tested both kids.... and Eli came back with Flu - Type A..... FOR THE THIRD TIME SINCE DECEMBER!!! Eli and Ella both are unable to get the flu shot because of the egg in it. The pediatrician actually took the test around to other doctors in the office to have them confirm it because they simply couldn't believe it was positive for the same strand for the third time! All he had was the sniffles! The pediatrician believed he was on the tail end of it, so she did not prescribe Tamiflu, but sent Eli home, to stay out of school the remainder of the week. That was on Tuesday.


Wednesday morning, Eli woke up vomiting. He wouldn't eat. He wouldn't drink. He would go into the restroom, but was unable to urinate. At one point, he came out of the bathroom, buck naked. I asked him if he was okay and what he needed. Eli looked at me, with a blank stare on his face, then looked around, shrugged his shoulders and walked off. This was, obviously, not normal. We tried running Gatorade through his g-tube, but did not see any results. So... it was off to the emergency room. They ended up admitting him Wednesday night and discharged him Friday evening. They believe that the flu just hit him too hard and caused him to become too dehydrated for his little body to handle it. Thankfully, he was still able to have his procedure the following week.


Fast forward to today, March 28 (Ella's First Birthday)... we have just finished the steroid for the yeast infection in his esophagus... and started a 10-day round of antibiotics for an ear infection. He's such a trooper!


Now, on to Ella!


This was her first procedure. It never gets easier; even with it being Eli's eighth. Then combine that with Ella's first.... talk about a nervous wreck!! But, as always, Cook Children's Hospital in Fort Worth was AMAZING!!! Ella was first on the list and Eli was third. So, once Eli arrived for pre-op, the put both of them in the same room, with made them (and us) very happy.

On top of having the upper GI scope and biopsies, Ella was also having a pH probe done. Since she was very young, Ella has always had horrible reflux and has sounded like she was aspirating. Medication has yet to help. The pH probe has a sensor on the end of it; it goes up the nose and down, into the esophagus and is supposed to record data for 24 hours.Note, I said SUPPOSED..... Ella, who we've since nicknamed "Hurricane Ella" managed to reach her little hand passed the tape and RIP the probe out of her nose after about 6-7 hours. This is a before pic. You can obviously see how displeased she is!

The probe was an outpatient procedure, so we were at the hotel when she ripped it out. I can honestly say, Fort Worth drivers were INCREDIBLY nice. I flipped my emergency flashers on and made my way to the Cook Children's Emergency Room. Other drivers were so courteous to let me go through traffic. Unfortunately, nothing could be done about the probe. It has to be placed under sedation and it was too risky to try sedating Ella again, twice in one day, and after eating and drinking some. So, we are still hopeful that some results can be found; Otherwise, we will have to complete the probe again in a few weeks. The doctor also ordered a stool sample. He wanted to see how (and if) her body was absorbing fats and sugars. We are still awaiting those results.

As for the biopsy results, they were the same as Eli's: no presence of eosinophils, but esophagitis. So, we are still very careful with what we introduce into Ella's diet, while also trying to introduce a variety of textures, consistencies and flavors (not an easy thing to do!).

So, now we wait. We wait for the other test results. We wait for the next appointment. We wait to see how both kids react to the foods we introduce to their diets. We've become quite accustomed to this waiting game.

We continue to thank everyone for their prayers and concerns. Adam and I have been blessed with some pretty amazing kids and we cherish the adventures we have with them as we enjoy the good and learn from the not-so-good!

Information Overload

Even though, when I started out with this blog, it was all about Eli and his journey, it has definitely developed into a shared blog about Eli AND Ella. So, from here on out, my updates will be concerning both of them, their medical updates and our journey as a family through all of this medical "stuff" (for lack of better word).

We just returned home last night from another trip to Fort Worth for appointments for the kids. We've gone from a 30 minute doctors visit with occasional procedures with Eli, to an all day or two-day trip with appointments and procedures and lab work, etc..... Eli had his second appointment Wednesday morning with Dr. Pfaff in the Pulmonology Clinic. We are still working to figure out what the best route of treatment is for Eli. It is difficult because of the overlap with his cough variant asthma and the symptoms of his EoE. The changes in weather (which happen quite often in West Texas) or an allergy flair can set off his asthma symptoms. However, Dr. P said that, all things considered, Eli seems to be doing well. We'll have to wait to see what his next GI scope and biopsies show, but otherwise, Dr. P is okay with us waiting 6 months to return for a follow-up. We have a fairly comprehensive Asthma Management Plan with meds, rescue inhalers and steroids, so that helps so much with managing his symptoms and being prepared for a "worse case scenario".

Wednesday afternoon was dedicated to both kids seeing Dr. Osuntokun in Gastroenterology. We've been so anxious, nervous and excited for this appointment. It was Ella's second appointment; we've been slowly introducing a very limited, carefully selected array of foods. However, she has still been visibly reacting to something. She has had the notorious "allergy shiners" like Eli gets when he is "flairing"/reacting, as well as eczema on her arms and legs. These are signs Eli had as a baby, but we didn't know then that they were related to food allergies. Anyway, Ella has also been having horrible reflux. Even though she is on meds, they don't seem to be controlling it. She has had several times that you can hear her spitting up or "refluxing", but nothing comes out; Then she starts to gasp for air and her eyes fill with tears. We're fairly sure that she is aspirating. It's pretty impossible to NOT compare our experiences with Ella to our experiences with Eli. When Eli was a baby, it seemed like we were doing lab work every time we turned around. With Ella, she hasn't had lab work since she was a newborn! So, Dr. O ordered a full panel of lab work; CBC, check for Celiacs, anemia, etc. We are hoping to get those results in about a week.

Dr. O also said that we need to go ahead and scope Ella to check for EoE and any damage to her esophagus. At the time of her scope, they will also be placing an Impedence PH Probe. This is similar to an NG tube, in that it will go up her nose and down into her esophagus. It has a little sensor on the end of it that will monitor any reflux and aspiration and record the results. It will have to stay in for 24-hours, so they will discharge us to the hotel after the scope, then Adam and I will be responsible for removing it the next day and taking it back to the hospital to get the results. While we're somewhat excited to do these procedures, simply for the fact of getting the results, we're also very nervous to have Ella sedated for procedures before she is a year old. It's also going to be very difficult to have the PH probe in for 24 hours and keeping her from pulling it out. But, getting these answers will definitely help us with planning and preparing for a course of action for Ella!

Since Ella will be one in about a month and a half, we will also be transitioning her from Elecare for Infants to Elecare Jr. Vanilla, which is the same formula Eli is on. It will be kind of nice to have them on the same formula instead of constantly worrying about giving them the wrong one! =)

Eli will also be having an upper GI scope and biopsies at the same time as Ella. It has been August of 2013 since Eli's last scope. Although we have not added anything new to his diet, he also seems to be reacting to something; allergy shiners, cough, eczema... the whole 9 yards. So, the scope will help us to know if it is something in his diet or just environmental allergies. If it is something in his diet, we will have to work to remove things to see if he improves symptomatically, as well as scoping clean. It kind of feels like we are starting over at square one. While we were at the appointment, Dr. O also changed out Eli's G-button since it hadn't been done in a while. One of these days, Adam and I will have to get comfortable enough to do it.

So.... In two weeks, right after Eli's 5th Birthday, we will be heading back to Fort Worth for these procedures for the kids. Our anxiety level is already through the roof. I don't think it ever gets easier, even though this will be Eli's eighth scope. Then, add Ella's first scope AND the PH Probe on top of that.... we're pretty nervous. However, we are still so excited to be moving in a good direction, getting answers and getting to a point of knowing where to go from here!

As always, prayers are greatly appreciated and we will post updates as we get them!!!

Ella's Turn

When we found out we were pregnant with Ella, it was about 2 days before Eli was admitted to the inpatient feeding therapy program, Our Children's House, at Baylor University Medical Center in Dallas. It was also about 2 months after Eli was diagnosed with Eosinophilic Esophagitis. Once Eli was diagnosed, we began researching like crazy; what causes it, how is it diagnosed, is it genetic.... One thing that we did learn was that, while researchers have not been able to identify a gene that is passed along, EoE does tend to run in siblings. So when we went for our first visit with Dr. Osuntokun at Cook Children's, I asked him what the possibility was that Ella would end up with the same disease. While I was expecting an answer of "50/50", "There's no way of really knowing", etc., I was kind of shocked to just get the short and simple answer of, "Yes."

So once Ella was born, we knew that we would need to be very diligent with watching for symptoms, documenting what she ate, how she reacted.... dissecting everything that went into her system. At least with Ella, we knew what to look for. And we knew we would need to follow-up with Eli's GI doctor.

Ella was initially breastfed. I also supplemented with Similac Supplementation formula. Ella was spitting up thick, fluffy, soured milk. This continued when I stopped nursing and switched to Similac Sensitive formula. Her pediatrician suggested trying Similac Alimentum formula, a hypo-allergenic form. Her spit-ups lessened, but it was still soured milk. Finally, they gave us samples of Elecare for Infants, the non-dairy based, hypo-allergenic "elemental" formula Eli is on, only for Ella's age. The difference has been pretty dramatic.

When Ella was about 6 months old, we introduced rice cereal. She seemed to handle it okay, but we did notice that she began to break out with eczema, one symptom of EE that Eli also had. One day when I was feeding her, I just took her shirt off. A bite of rice cereal dropped on her chest and she quickly broke out in a rash where it had touched. We've been able to introduce apple, sweet potato and green bean all without incident. With carrots, she began spitting up quite a bit, all of it orange, like it was not digesting.

We did do skin-prick allergy testing with Ella, like we did with Eli. Amazingly, she tested negative for everything. Once we met with Dr. Osuntokun on Thursday, he explained it that she tested negative because her body has never been in contact with these foods. So naturally, her body is not yet reacting to it. He said she was basically just too young to allergy test. However, Dr. O said that, based on these reactions Ella has had to dairy, grains and carrots, she is allergic to them and they need to be avoided.

Dr. O prescribed Nexium for reflux and ordered that she stay on Elecare for Infants. We were so glad for this order! When the pediatrician was wanting her on the formula, it was basically without reason since she did not have a formal diagnosis. So, we were going to be stuck paying for it out-right ($68-93 per can), then being reimbursed for it. With the GI's diagnosis, Ella's insurance will cover it! We are so thankful for that!

So, at this point, Ella is diagnosed with food allergies and GERD (Gastroesophageal reflux disease). We will continue to monitor Ella's foods and reactions to them. We will also return to Cook Children's in February with Eli to follow up. Dr. O does not want to have to do an upper GI scope at this point, but it may be something we have to do in the future. We will also look at repeating the allergy testing later on, once Ella has had more contact with different foods.

So, the process begins. We just have to continue to be diligent and cautious. Again, at least we still have more information and awareness with Ella than we did with Eli. Hopefully this awareness will be in our favor as we proceed with Ella!

Adding Another Doctor to the Mix

Eli and Ella had doctor appointments at Cook Children's Hospital on Thursday. On top of his regular GI follow-ups, Eli also met with a new doctor, Dr. Pfaff, with Pulmonology.

Eli has always struggled with asthma symptoms and upper respiratory infections. At his GI appointment and upper GI scope in August, Eli had a horrible asthma flair. The doctors were hesitant to do the scope, saying there was too much of a risk that his lungs could collapse during the procedure leading to him being admitted to the hospital and being put on a ventilator. But they sent us for chest X-rays to check his lungs and to the hotel to do back-to-back nebulizer treatments until his scope the next day. Once we arrived to the hospital the following day, his lungs were clear and they felt confident in going forward with the procedure. Once it was done and they removed the breathing tube, Eli coughed so hard that he ended up busting the blood vessels in his face. His body also had a bit of an adverse reaction to the meds, so his face and neck were very puffy and flushed.

Since then, we have been doing nebulizer treatments every morning and night with Albuterol and Pulmicort mixed and cough medicine every morning. The treatments haven't necessarily "helped", but we could always tell when we did not do the treatments; he would cough non-stop and wheeze horribly. A few days before his first Pulmonology appointment, Eli asked me why he coughed so much. I assured him that we were going to try and figure that out.

I know I say this all the time, but I continue to be impressed each time we go to Cook Children's Hospital. Dr. Pfaff was absolutely amazing. From the time he entered the exam room, he was incredibly engaging with Eli and respectful of Eli, treating him not like a child, but like an equal. Eli even said that he liked Dr. Pfaff, which is NOT normal for him.

One of our major concerns with Eli stems from testing that was done several years ago, before we had the Eosinophilic Esophagitis diagnosis. Before this, the doctors had questioned if Eli had Cystic Fibrosis. They tested him three times for it. The first two times came back "elevated", with the final test coming back "negative". Dr. Pfaff explained that the sweat chloride test probably did not collect enough sweat, so it was very concentrated, leading to the "elevated" results. But after looking at all of the results, Dr. Pfaff felt confident that Eli does NOT have CF!

Dr. Pfaff does believe that Eli does have cough-variant asthma. This is the diagnosis the docotrs had given him in Lubbock. However, Dr. Pfaff feels that, with the combined diagnosis of EoE and cough-variant asthma, the "medium guns" treatment we had been doing to control his asthma was simply not powerful enough. So, he gave us a "big gun" treatment plan. We are changing the medicines that Eli has been taking, plus changing from nebulizer treatments to inhaler treatments. He also gave us a prescription for an oral steroid to have on-hand if Eli's asthma gets to the point of treatments simply not working.

Dr. Pfaff went ahead and ordered another set of chest X-rays so he could make sure that there are no anomalies that have been missed during past X-rays. He also wanted to do another test to check Eli's lung function, but Eli was not willing to cooperate. He sent a piece of the test equipment home with us so that Eli can practice with it and get a little more familiar with it. We follow up with Pulmonology again in February and can hopefully complete the Lung Function test.

After Pulmonology, we went to Eli's GI appointment. We were concerned because Eli is only eating sweet potato, carrot and butternut squash. His skin is starting to turn orange again! Dr. Osuntokun assured us that this is actually a GOOD thing! It is called Carotenemia and it simply means that Eli's intestines are working very well and it is not harmful in the least.

Because all of Eli's veggies are orange, we had hoped to introduce a new vegetable to his diet: peas. We found several "mixes" that include pea, so he wouldn't be eating straight peas. However, peas are very high on Eli's allergen list; TOO high actually. So, Dr. O recommended that we do NOT introduce peas and that we, in fact, NEVER introduce peas to his diet.

He sent us to speak with the Dietitian/Nutritionist on staff for suggestions. Tomato is very low on Eli's Allergen List, but we didn't know how to go about introducing it. We were pleased to find that Campbell's Tomato Soup is dairy and soy free! So our next plan is to introduce tomato soup! We're also very excited about this because Eli has NEVER had warm food! All of his foods have been room temperature or cold. So this will definitely be a new, although difficult, experience for him. We plan to water it down a little bit and let him "drink" it rather than try to eat it with a spoon. I have also been able to find Sweet Potato soup and Butternut Squash soup for him to try!

Dr. O also gave us samples of a probiotic to keep on hand for Eli based on the oral steroid that Dr. Pfaff from Pulmonology gave us. Oral steroids tend to be hard on Eli's tummy, so the probiotics will be very helpful for him.

So, it was definitely another successful trip to Cook Children's Hospital! We are pleased to have been able to get in with Pulmonology. Even though it adds another doctor into the mix for Eli, we feel that it is one more huge step toward making sure that Eli is as healthy as he can possibly be!

Eli's First Field Trip

It has been a while since I've posted. I keep meaning to take the time to sit down and write, but every time I turn around, it seems there is laundry to do, a house to clean, a baby to feed.... But I have finally been able to take a few minutes to catch up!

He is doing absolutely wonderful in school. I am reminded each and every day just how much of a blessing Pre-K has been to him. He is able to socialize with others his age and loves each of his classmates. He is still working with his "team" on a daily basis, working to learn how to chew and control food with his tongue and getting over his immense fear of food and eating.

A few months ago, back toward the beginning of the school year, Eli's class took their very first field trip! Even though it was an exciting thing, it was also an anxiety-provoking event. For a kid with EE, even every-day tasks take a great deal of planning. A field trip, especially to the Corn Maize..... took a LOT of extra planning and work. Multiple phone calls between myself and school personnel, meeting with his school nurse and phone calls to his pediatrician, allergist/immunologist and gastroenterologist....... It was finally decided that Eli should be safe to attend and participate, but we had to take certain precautions. I would have gone either way, but it was decided that school nurse could not be away from campus all day, so if Eli wanted to go and participate, I HAD to go. They would be spending most of the day there, eating lunch, seeing the petting zoo, going through a miniature hay-bale maze, a hay ride through corn fields, then finally going through the main attraction: a Wizard of Oz themed corn maze. On top of Eli's EE, there were also multiple environmental allergies to be concerned about.

So... I packed my bag. EpiPen, allergy meds, wet wipes, topical allergy meds, a mask, inhalers and safe snacks. I looked like I was ready to go on a weekend-long trip with my big bag! The teachers all laughed and said they were glad I was prepared for anything!

Once we arrived, the teachers said that they could turn around right then and go back to the school and the kids would have had the best day ever just riding on the bus! For most of them, it was their first time on a school bus and they all loved it!

Eli had a great time with only a few minor issues. His eyes were a little irritated from the blowing dust and hay, but he was very conscious of his surroundings, not touching the hay, corn or animals. When they were taking a class picture, his teacher started to pick him up to have him sit on a hay bale and he quickly said, "No! I can't sit on that!"

And he was more than happy to wear his mask! (I was afraid that would be a battle since none of the other kids were wearing one, but he happily agreed!)

 

 

Eli really had a great time and I'm so glad that it was a successful field trip with no major issues. Honestly, I had nightmares about something happening and having to leave to rush him to the ER. But, everything went off without a hitch and we are happily looking forward to and preparing for our next school field trip! I know that, due to his health issues, I will probably be in attendance at each one of them, but I'm so happy to be able to share in these experiences with my sweet boy!

 

Riding the Cow Train.

Going through the miniature Hay Maze.

Pumpkin Jail!!

The beautiful pond! Eli loved seeing all the fish swimming around!



Making Memories!

It's hard to believe, but my little boy is growing up! Eli started Pre-K this past week! We had been working all summer, going to meetings and testing, and it finally worked out and Eli qualified to attend! We are so excited, as we feel it will be so good for him!

Just a few days before school started, we attended Eli's ARD meeting. What an experience! There were so many people there; both principals, the diagnostician, two speech therapists, the occupational therapist, the nurse, Eli's teacher, and the Special Ed. Inclusion specialists (because Eli will be receiving some services and have special accommodations for eating, if needed). I'm sure I'm leaving a few people out, too. Needless to say, it was a little overwhelming, but Adam and I both felt SO relieved after the meeting! The nurse is going to weigh Eli every week to make sure he is not losing weight. The speech therapists, one of which has TONS of experience with eating and swallowing issues, will be working with him twice a week. The occupational therapist will be working with Eli once a month on sensory issues. Plus, half was through the meeting, Eli got restless so he ended up on the floor playing. Within seconds, his teacher was right there with him, laying on the floor, playing and coloring!

  

 

 

It makes it so much easier to send him to school knowing that he has a loving, energetic teacher!

 

The first two days were a little tough. They eat breakfast, lunch and snack at school. Both days, Eli came home without having touched his food. Knowing that your child has gone all day without eating will break your heart! However, we also went into this expecting that he would struggle some, so it was somewhat expected that he would not eat at school for a while. So, we came up with a plan! We call it incentive.... others may call it bribery, but it works! We've made a chart where Eli can earn stickers each day: 1 for not crying in the morning, 1 for not having an accident at nap time, and 1 for eating most of his food. If he earns 10 out of 15 stickers at the end of the week, he can get a slushie from Sonic. At the end of the month, if he earned 3 out of 4 slushies, we go do something fun, Eli's choice! After even just discussing the chart with Eli, he began eating at school! He even came home one day with every bowl scraped clean!!! We are so proud of him and the way he has already adjusted so well!

 

We also started a new tradition with Eli that we'll also do with Ella. We made a t-shirt for Eli with "Class of 2027" on it. We'll take his picture in it the first day of school every year to see how he grows. We also made a sign with information about him on it; his height, weight, age, who his teacher is, what school and grade he is going to, and what he wants to be when he grows up. We're so excited to see how it all changes from year to year!

 

 

We've also had another new experience. A good friend of mine makes her own baby food. And after talking with her about it, I decided to give it a try! It is so much easier than I thought it would be and definitely cheaper than buying it! And so rewarding! I basically just make all the things that we were buying, plus a few of my own creations: Pears & Squash, Apples & Squash, Pears & Pineapple, Apple & Chicken, Apple & Sweet Potato, Sweet Potato & Apple, Sweet Potato & Chicken, Sweet Potato, Carrots, Apple & Blueberry, Apple & Oatmeal, and Pears & Oatmeal with Cinnamon & Sugar. I'm also looking for new recipes to try. It made me so happy to see Eli eating the foods that I made for him!! We just cook it till tender, blend it up to the consistency he needs, then freeze it in silicone ice cube trays! My freezer is now full of Ziploc baggies of Eli's special foods!

 

 

Before Eli started school, we also had one more GI appointment and procedure. Before this procedure, we trialed coconut. We were really hopeful that Eli would like it and not react to it so it would provide an option for yogurt. Yogurt used to be one of Eli's favorite foods. Actually, when Eli quit eating back in August 2010, yogurt was basically the ONLY thing he would eat for several months. Little did we know, it was one of his highest allergens (cow's milk). Once we got to the appointment, Eli had a horrible asthma attack. We were sent from the GI clinic to get a chest x-ray, then to talk to the anesthesiologist, then to the PA. The chest x-ray showed either a viral infection or asthma, but they were unable to tell which. The PA said that she was certain they would have to cancel the procedure. She told us that the worst case scenario would be that his airway would collapse and he would end up in ICU. Not the most comforting thing to hear.... But, because we came from so far away, she told us to go back to the hotel and do breathing treatments, then return to the hospital the next morning to be re-evaluated. We set alarms for every 4 hours to do breathing treatments; 5 from the time we left the hospital until we returned the following morning. They also gave him one once we arrived at the hospital. After breathing treatments and prayers, Eli's lungs were clear and they were able to do the procedure! At the end of the procedure, when they removed Eli's breathing tube, he coughed really hard for a while. So hard, in fact, that he popped blood vessels in his face. It was a little scary to see his little face like that, but they said his lungs were still clear and he was okay. You can kind of see in the picture below all the red, flushed spots on his cheeks, eyes and around his jaw line.

 

 

 

We received the biopsy results a few days ago and they were clear! There was some inflammation, but nothing too major. We are so excited to be able to add coconut to Eli's diet! Because Eli has a good variety of foods now, we will not add anything new to his diet for the time being and will return to Cook Children's in October for a follow-up with his GI doctor.

 

We are so relieved and blessed to have such a healthy, resilient little boy. Adam and I were talking the other day about how happy of a kid Eli is, especially considering all he has been through. We ask for continued prayers as Eli goes to school, that he will continue to eat and stay healthy.





 

 

 

Biopsies, Belts, Books, Back scratch and Bracelets!!!

Note: This blog has been edited since it was first posted. I had to add a few more "B's"!!! Back scratch and Bracelets!

My apologies for taking so long in posting again! It's amazing how little time there is in the day with a second baby in the home now! Time to sit and do anything is few and far between!

So much has happened since my last post. It may seem like more of the same, but in our family, every procedure, every appointment, every day really is a new adventure!

Eli had his procedure in May with the ENT. He placed tubes in his ears, removed his adenoids, and flushed out the nasal passages. What an amazing change it has made!! So far, Eli has not been sick with the upper respiratory/ear/sinus junk he seemed to have so often before the procedure! We're thrilled that he is doing so well and pray for continued success and health in the coming months. We actually just went for a follow-up with the ENT yesterday. He said that Eli looks great and his hearing test was awesome! Eli is actually in the "normal" range now with his hearing! YAY!

We've also been back to Cook Children's Hospital for another check-up and scope with Dr. Osuntokun. The scope showed no eosinophils, so that means Eli is not reacting to any of his current foods. However, he did have yet another yeast infection in his throat. We've just finished up another round of antibiotics to clear that up. Dr. O also gave us the go-ahead to trial two new foods before Eli's next appointment in August. So, we've decided to try coconut (mainly to hopefully give Eli an option for yogurt, which he LOVES) and broccoli. Broccoli is a difficult one because, since Eli only eats purees, it's not too easy to find options that have broccoli, but NOT any of his allergens. We're hopeful that he will like and tolerate it so he can have another option for veggies! Right now, he's mainly eating squash, sweet potatoes and carrots. One good thing we've tried is zucchini. Since it is in the squash family, we're able to try it. However, Eli's not too fond of it.... or trying any new or different things for that matter. Because of the EE and the pain associated with it, Eli does not enjoy food, so trying the new things is always a challenge.

When we were in Fort Worth back in April, we were also able to see Eli's new Endocrinologist, Dr. Wilcutts. He was very informative and it was so awesome to have a second opinion. Where the Endocrinologist here in Lubbock said "see you in 8-10 years", Dr. W said that he wants to see Eli on a yearly basis to monitor him and "keep him in the loop". We're very excited to see what options and information Dr. W can provide!

And I'm sad to say.... my baby is growing up! =( It has happened so fast! I love seeing the little boy he is growing in to, but it is still difficult to let him go and become more independent! We are, however, happy to say that he should be starting preschool through our school district this August. We still have one last meeting to attend, but we're hopeful that he will be accepted. Eli is such a smart, curious little guy! School will be really great for him! In preparation for school, we ordered a protective belt for Eli's g-tube. He is so active, we've often worried about him hitting his tube or, even worse, accidentally pulling it out! His belt arrived a few days ago and he LOVES it! The first thing he did was decorate the "turtle shell" with a Transformers sticker (not shown in this picture)!

 

If nothing else, hopefully this belt will give us some peace of mind that his button is protected while at school!

 

 

We've also ordered some new books for Eli. We know kids can be curious (and sometimes a little mean) when it comes to things that are different or things that they just don't understand. We're hopeful that his teacher will be able to read these books to his class to help them understand a little better! Eli is, unfortunately, getting to that age where he is realizing that he is different from the other kids in the way he eats. So maybe these books will help him feel better and a little more accepted and "normal".

 

*"My Tubey: A Day in the Life of a Tube Fed Boy" Written and illustrated by Rhiannon Merritt-Rubadue

     Thousands of children in the United States have a feeding tube. With charming illustrations, My Tubey follows along as one little boy goes about his life with a G-Tube. After all, we have lots of different body parts, some kids just have something a little extra -- a tubey!

 

*"Eating Isn't Always Easy: Ben's story about his Eosinophilic Esophagitis" Written by Nancy S. Rotter, Ph.D. and Qian Yuan, M.D., Ph.D. Illustrated by Phoebe Rotter

     A much-needed antidote for the frustration children have living with the complex and challenging illness.

 

*"There's More Than One Way to Eat!: A My Tubey Book" Written and illustrated by Rhiannon Merritt-Rubadue

     There are many different ways to eat! Some children eat with their mouth, some have a feeding tube in their nose or in their belly, and some kids get special food intravenously! This colorful and educational book shows children eating in every possible way. Perfect for young children on enteral or parenteral nutrition, and for their caregivers and teachers.

 

After Eli's check-up in April, Dr. O said he wanted to NOT introduce any new foods before Eli's scope in July. Between the two appointments, he wanted us to also re-test Eli for his allergens via a back scratch test with Eli's Allergist and Immunologist, Dr. Mamlok. Sometimes, after allergens are avoided for a period of time, they can get better. We had that test done at the end of June. Unfortunately, most of Eli's allergens stayed the same instead of getting better. The only major change since Eli's initial testing last year was cow's milk, which actually got worse. With the initial testing last year, egg was Eli's main allergen. Dr. M gave us an Epi Pen for it because it was so high; at this testing, cow's milk was HIGHER than egg! So, that completely eliminates any dairy for Eli.

 

And a BIG thank you to my Mom and Step-Dad, Cindy and Dave Hanes! They love Eli so much and are a HUGE source of support for us in all of this. They were kind enough to order awareness bracelets in honor of Eli. We are so proud to raise awareness and show support for our Tubie!! Needless to say, we are all wearing our bracelets with pride!! 

 

 

 

So, we'll go back to Cook Children's in August for another check-up and scope. Fingers crossed that coconut and broccoli are safe! We also plan to take Eli to the zoo while we're there! We know the appointment and especially the scope are difficult on him, so we like to do something fun for him while we're there! Pictures to follow!!!