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!!!

 

 



Busy Busy!!!

So much has happened since Eli's birthday just two short months ago! Eli is proud to announce that he is now a big brother! Ella (Elizabeth Grace) was welcomed into the world on March 28, 2013. Eli is adjusting BEAUTIFULLY to life as a big brother. He loves his little sister so much and has been a great help!

We have taken Eli back to see his ENT, Dr. Potocki. After being so sick and on so many steroids and antibiotics from November to February, we decided that something else needed to be done. Dr. Potocki agreed that Eli has been too sick too much. He wanted to try Nasonex nose spray for a while. We gave it a try and it seemed to help with Eli's drainage, but made his nose so bloody.... we haven't used it in a while. Dr. P also suggested putting tubes in Eli's ears, removing his adenoids and flushing out his nasal passages. After his follow-up appointment this morning, we decided that is the best route. Dr. P said that we are getting to the time of year that "illness" is subsiding and kids aren't getting sick so much right now; yet Eli just finished another 14-day round of antibiotics. So, Eli is on the schedule to have the procedures done next Friday, May 10. We are really hopeful that going ahead with these procedures will help Eli avoid being so sick in the future. We ask that everyone keep Eli in your prayers next Friday. Even though it is a minor procedure, Eli has had so many procedures in his little life and it still isn't any easier on him or us.

Eli has also had another regular appointment with his GI doctor, Dr. Osuntokun, at Cook Children's in Fort Worth. All we introduced since his last appointment and scope/biopsy was cow's milk. It was one of the higher allergens, but we were really out of any other options. We were so hopeful that cow's milk would be ok, but it was anything but. Within a day of eating a little bit of yogurt, Eli's allergy shiners came back, he began coughing and his hands broke out with HORRIBLE eczema, to the point of his knuckles cracking and bleeding. Since that was the only new food we trialed and he had an obvious reaction, Dr. O decided to not do a scope or biopsy this time around. He has told us that he would like us to have a follow-up with his allergist/immunologist Dr. Mamlok to retest all of his allergens. Dr. O is hoping that, since he hasn't had some of these foods in a while, his body will no longer have such a bad reaction to them. We've scheduled that appointment with Dr. M for early June, then we will return to Cook Children's to see Dr. O for another appointment and scope/biopsy in late June. We will not reintroduce any new foods between now and then. We're definitely anxious to see what the results of the allergy testing show.

In the meantime, we're continuing with his feeding therapy, working on his chewing and strengthening his jaw muscles. Eli is really working hard and we're so proud of him! Now we just need to wait and see what the next few months hold following his ENT procedures and allergy testing!! I continue to be amazed by Eli's strength through all these procedures and tests! He's such a trooper!

Celebrating more than just a birthday!

After his 4th Birthday Party!

Eli's first day home from the hospital

 













Where has the time gone!? Eli turned 4 on March 3 and I can't believe how he has grown! Since I was 34 weeks pregnant, we just had a small party with family and friends at the house and Eli couldn't have had more fun. He cried when his friends left because he wanted them to all stay and play longer! Such a sweet, tender-hearted little boy.

The weather was nice enough that the kids were able to play outside on the swing set for a little while and we even had a pinata (by Eli's request). He had so much fun opening all of his gifts, but he wasn't able to say "thank you"; as he explained to me after opening each gift, "Mommy, I told you. I can't talk because I have the hiccups!". We also had a Spiderman cookie cake and Spiderman cupcakes, even though Eli is not able to eat them. He did blow out the candles though, after covering his ears as everyone sang Happy Birthday to him. (I think he was a little shy and embarrassed being the center of attention.)

Eli did give us a little surprise after the party was over and everyone had left. Out of the blue, Eli told us that he wanted to eat a cupcake!! Talk about shock! I think we all looked at each other with this, "Oh no! What do we do?" expression on our faces. We knew that the dairy and egg were things Eli simply couldn't have... but how do you tell him "No"? So, we went ahead and put a cupcake on a plate, got one of Eli's spoons and sat it all down at the table. Eli mashed around on it some with his spoon, got a tiny bit of icing on the tip of the spoon, then very carefully touched it to the tip of his tongue. He looked satisfied, set the spoon down and was done! Even though it is a scary thing, thinking that he could eat something and have a reaction, it's also so much fun to see him willing (and wanting) to try new things.

As we celebrated Eli's 4th Birthday, I was reminded of just how much we have to celebrate with his little life. From the time, over 4 years ago, when I was pregnant with him, sitting in the hospital, barely 21 weeks pregnant and in pre-term labor, scared to death and worrying about what would happen if he decided to come so early..... to the time that August 2010 when he was about 15 months old and just suddenly stopped eating with no explanation as to why..... then the countless doctors appointments, procedures, tests and ER visits leading up to March 2011 when the doctor finally said he needed a feeding tube, but he didn't have answers as to why.... and CPS showing up at our door, telling us they were there to investigate us due to our child being ill and us taking him to the doctor too much (which I'm still baffled by)..... then finally to that wonderful day in June 2012 when we went to Our Children's House at Baylor for Eli's evaluation and got that glimmer of hope that we would soon be getting answers, followed by testing that gave us a diagnosis, then Eli's admission to OCH in August 2012 when he began eating again 2 years after he had suddenly stopped. Wow. Talk about a roller coaster!!!! So many scary moments. So many times of unknown. So many nights of crying and praying. And so many times of looking at our beautiful son and thinking, "Wow. We are blessed beyond measure!"

Even though these past 4 years of Eli's life have been a whirlwind of emotions, I look at him now and think of all the wonderful things we have to celebrate. Each day is a new adventure, a new blessing. We have a little fighter in our midst!!! To see the strength in his little body and mind; to see that despite all the poking and prodding, the tests and procedures.... it never broke his spirit. He has always been such a happy, kind-hearted, loving little boy! I sit and wonder sometimes, how such a tiny little person can have so much strength!

I am so grateful and blessed to call this little boy my son! In his 4 short years so far in this world, he has impacted and changed my and my husband's life more than we could have ever imagined. We can't wait to see what the next year has to hold for our little boy. We dream of the man he will become and the wonderful things he will do with his life. Simply so much to celebrate......

Meds, Food and More meds....

I hope everyone had a wonderful Thanksgiving, Christmas and New Year. And now that the holidays are finally behind us and I have finally found some time to sit down and post an update!

Eli had a great holiday season! This was the first year that he actually got excited about Santa, decorations and opening gifts. And he has also learned so much at his new preschool and talked several times about Jesus and the manger.... Well, more about the donkey that Mary rode, but at least it was a start! Even though he really enjoyed the holidays, it has been a tough few months on his little immune system, as I'm sure most of you have experienced the bug/flu/cold yourself. Eli has been to three doctor appointments for his cough/congestion/fever and been on 2 steroids and 3 antibiotics from November 26 to January 2 and he still hasn't been able to shake his cough and congestion. So.... we're off to the doctor again on Friday. I'm hoping something will finally get this cleared up for him. However, we have been VERY thankful that he has not caught the flu this year. With his high egg allergy, he's unable to get the flu shot, so we've been very protective and careful with him this season trying to keep him safe from that.

We've also been back to Cook Children's Hospital in Ft. Worth for another appointment with Dr. O (GI) and another scope. That was on January 8 & 9. Over the past three months, we have introduced tomato, rice and corn to Eli's diet. He handled the rice and tomato really well. It was nice to be able to introduce the rice and finally have a little bit of texture and consistency to Eli's foods so they weren't so thin and watery. The corn, on the other hand, didn't go over so well. Once we introduced it, Eli's cough started and he got his "allergy shiners" back. Allergy shiners are an outward indication that Eli is having a flare. Because he has this allergen present in his body, the blood vessels constrict, making blood flow difficult, so the blood simply pools under his eyes, constantly making it appear that he has red/purple bags under his eyes.

This reaction to the corn was confirmed just a few hours ago when the nurse from Dr. O's office called with the biopsy results from his scope. Eosinophils were present in his esophagus. This is the first "bad" scope Eli has had since his diagnosis was first confirmed in June 2012. Since we are almost 100% sure that it was the corn causing the reaction, we will remove that from Eli's diet. Another yeast infection was also present in Eli's esophagus, so he will be starting treatment for that; 21 days of antibiotics.

While visiting with Dr. O, he was able to answer quite a few questions for us. We were concerned about the dangers of so many scopes and biopsies. Can that lead to increased risk of esophageal cancer? But Dr. O reassured us that this was not a concern. Are scopes and biopsies going to be our routine every two-three months for the rest of Eli's life? Dr. O feels that Eli has had enough foods introduced into his diet and he has been able to tolerate them well enough that he may only need one or two more scopes. We would then just rescope and biopsy as needed, if we have concerns or introduce a number of other foods. We are scheduled to go back in April and we're hoping this will be Eli's last scope for a while. Are there things that Eli should just never have? Dr. O was able to go over the list of Eli's allergens and tell us what foods Eli should definitely stay away from. Those foods include: ALL nuts (even though pecan is a safe food that Eli had no reaction to during testing, we don't want to risk it since he had such a high reaction to all the other nuts), corn, shrimp and of course egg. We were given the go ahead to try cow's milk which we plan to introduce toward the end of March.

Also, while at Cook Children's Hospital, I visited with the Endocrinology Department. We have seen an endocrinologist in Lubbock in August 2011. She said that Eli looked fine, but did confirm that he has Klinefelter Syndrome 47XXY and to come back in 8-10 years. Well, of course that doctor is no longer in Lubbock.... and we were a little nervous about waiting 8-10 years with really no information of what to expect during that time. We were very lucky to be able to schedule an appointment with the Endocrinology Department at Cook Children's Hospital during the same time we will be back in April for Eli's next scope and biopsy! We're very excited to get a second opinion and more information about this diagnosis and what it means for Eli!

Eli has really made some great progress over the past few months since coming home from Our Children's House at Baylor Medical Center in Dallas. We have continued with his therapy in Lubbock. He has started to gain strength in his jaws and we are hoping to be able to try solid foods within the next year or two. This is a slow process and we were told that it can take up four years to master the task of chewing. He is also gaining control of his tongue which we help greatly once we start to introduce a variety of new textures to his diet. The other day, Eli actually told me, "Mommy! My tongue can help me push food back in my mouth when I eat!". He was so excited (and so were we!!). He has also started eating a larger variety of foods. His most recent additions are Gerber Turkey and Sweet Potatoes, Gerber Apples and Chicken, and Gerber Chicken and Rice. He really seems to like them!!

Eli does still have his feeding tube and still has his feeds for 10 hours every night. We have talked to the dietitian/nutritionist at Dr. O's office and will be upping his feeds from 250 ml's a night to 310 ml's a night over a 10 hour period. While he is still on the growth chart, his weight has plateaued some, so we are upping the feeds to help him get a few extra calories.

We are anxious to see what the next few months hold as we introduce the last few foods to Eli's diet, as well as what new information we gain from the Endocrinology Department at Cook Children's Hospital. Thanks to everyone who has asked for updates and kept Eli (and us) in your prayers! He is doing so great and we are thrilled to see how he grows and develops every day! He's such an amazing little boy!