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!

Keep the good news coming!!!

Well, we had Eli's second scope and set of biopsies with Dr. Osuntokun done in Fort Worth at Cook Children's Hospital last month. I was very thankful that my mom was able to attend the appointment and procedure with me. It gave us some really good Mother-Daughter-Eli time! =) It seems like we don't get those opportunities near enough anymore!

I was also really excited that my mom got the opportunity to meet Dr. O and see the facilities at Cook Children's. That hospital is absolutely amazing!! The facilities, staff and amenities there are just fantastic! Mom was very impressed as well!

After Eli's procedure was done, Dr. O came out to visit with us. He said the erosion in Eli's esophagus was completely healed and he thought the esophagus itself looked very healthy. He was also able to change out Eli's G-tube while he was still sedated. Mom and I got a brief tutorial on this the day before at his appointment. We will definitely need to know how to do this in case of an emergency! Anyway, he went ahead and did the routine biopsies and said it would take 7-10 days to get the results back. However, the photos from the scope looked AMAZING!! I think this was the clearest Eli's little esophagus has ever looked!

So about 2 weeks after the procedure, we received the results of Eli's biopsies.... NO SIGN OF EOSINOPHILS!!! That is our second clean scope! We couldn't be happier about this! So, we are still slowly working on re-introducing foods to Eli. This is still a little difficult because there are some food items that we have to absolutely avoid.... and unfortunately, some of these things appear in practically EVERYTHING! Also, Eli is still on pureed, non-solid foods and those options are relatively limited. But, he's doing great! We are waiting for the doctor's office to call us back and schedule another round of appointments and procedures in mid-December or early January.

It makes my heart happy every time Eli comes to us and says, "I think I'm hungry!", then runs over to his cabinet and pours over his options, finding exactly what he want to snack on! It was a little upsetting the other day when he asked to drink a smoothie, one of the items that he absolutely can't have. He hasn't asked for or been offered one since August. To make matters worse, he was looking for a Popsicle in the freezer a few days ago and stumbled upon a frozen go-gurt that we forgot was in there. He came running to me with it in his hand saying, "Mommy! PLEASE I have this?!" It kind of broke my heart to have to explain to him that he wasn't able to have it because it would make his throat and tummy hurt and make him sick. (Note to self: double check fridge, freezer, and ALL cabinets for "forbidden"foods!)

On top of ALL this wonderful news.... we are VERY excited to announce a bit of more good news.... Two days before Eli was admitted to Our Children's House at Baylor, we were blessed to find out that we are expecting a second child! I am 17 weeks pregnant now and we have found out that Eli will be having a baby sister, expected April 12, 2013!! We are all very excited! Even Eli keeps telling us, "I can't WAIT to be a big brother!". He is already very loving toward his little sister, kissing my belly and hugging it every night before bed and asking endless questions about "baby". We do ask that you please continue to keep us in your prayers; Eli for continued healing and good reports, and me and baby for a healthy pregnancy and delivery!

Our little family is growing!!!

Another check-up

This past month and a half since returning from Our Children's House sure has been busy!! I am really loving my new job as the Family Advocate for the Children's Advocacy Center of the South Plains here in Lubbock. We have also moved Eli to a new Preschool/PDO four days a week. He really seems to be loving it there and he is doing so well! I continue to be surprised on a daily basis by the things he is learning and picking up! He is growing up too fast!

Eli, my mom and I just returned from Fort Worth where Eli had a check up with his new GI doctor, Dr. Osuntokun, at Cook Children's Hospital. I continue to be incredibly impressed with this place! My mom and I kept saying that we wondered how Eli would be now if we had come to Cook Children's in the first place, instead of two years after all of Eli's health issues began. Dr. Osuntokun is definitely an amazing doctor. He listens, answers all your questions, and is just a great person! I was impressed when, during the appointment, Eli was a bit resistant, but it didn't "bother" Dr. O. And when Eli began making noises (kind of motor-boating his lips), Dr. O mimicked the sounds back to Eli, without ever skipping a beat! And I was also very impressed that, while at a Specialty Hospital, we were in and out within 30 minutes of Eli's appointment time! When does that EVER happen?!

The next day was Eli's procedure at Cook Children's hospital. Eli had an upper GI scope, biopsies of his esophagus, and they changed out his G-button. The pictures from the scope were the clearest I have ever seen! We are very hopeful that the biopsies will come back clear. We expect to get those results any day now. We were concerned about the granulation tissue around Eli's G-button. Dr. O was going to cauterize it, but upon closer inspection during the procedure, he was able to see that it is not granulation tissue; it is actually scar tissue. He said that if he removed it now, it would be an open wound and would take quite a while to heal and that, for the moment, it is purely cosmetic.

We were in recovery with Eli for a while longer than expected, mainly because he had a hard time waking up from the anesthesia and had thrown up after they removed the breathing tube. He had had some congestion for the past two weeks and his right lung was congested during the pre-op exam, so they also gave him a breathing treatment before we were discharged. The care they gave Eli was amazing; just one more thing that impresses me about this hospital and it's staff.

So, now we are just waiting for the biopsy results! Once we get those, we will schedule another appointment and possibly another scope. We expect this to be routine, every 2-3 months, for the next couple of years. We will see Dr. O regularly as follow-ups and to monitor Eli's GI health and G-button. GI scopes and biopsies will be scheduled and performed based on the previous scope and biopsy results. So, we'll just wait till we hear on these results and make plans from there. But we are anxious and excited to be able to introduce new foods to Eli and continue to watch him grow!