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!

OCH: Week Four

WOW! I feel terrible that it has taken me this long to blog about our last week at our Children's House. After returning home, it was just a whirlwind of trying to get settled, get back into a routine and get ready for me to start my new job and Eli ready to start back to school! So FINALLY.... here is how our last week went...

Monday, August 27, 2012 - Eli tried mandarin oranges and steel cut oats today. He wasn't too sure he liked them. At his 4:30 meal, we had a minor set-back. One of his black beans was not blended; he threw up everything he ate as soon as that bean touched his tongue. Unfortunately, during his weight check today, Eli has only gained one ounce during his stay here.

Tuesday, August 28, 2012 - I got to feed Eli alone this morning, without the therapist in the room! She watched from the observation room and said we're doing great!! Eli is scheduled for two speech therapies today. So I'm hoping that means they will finally be introducing another new food. I talked to Dr. Austin (the psychologist) today and she thinks we will get to go home on FRIDAY!!!!! I am so excited! I'm also sitting in on speech therapy now to learn how to introduce new foods and I will get to start learning how to make and prepare his foods soon! Eli ate too fast again and threw up his 1:30 feeding. Gotta slow it down a little more.... Eli ate 6 bites of blended creamed corn. We made sure he only got the liquid and no kernels, but he did great!!

Wednesday, August 29, 2012 - Eli had Quinoa Blended Gluten Free Oat Cereal with Mandarin oranges (all blended together) for breakfast. Then at speech therapy, I introduced NeoCate Nutra (tasteless yogurt/whipped cream consistency fluff) to Eli, as well as Cinnamon Apple Oatmeal baby food! We had our final care conference today. They suggested coming back in 6 months for the 5-week Day Program to work on feeding and chewing. This would be out patient. They said that once kids start eating, it normally takes about 3 years to master chewing. So since Eli is just starting.learning to eat, we can estimate that it may take 2-3 years before he is able to chew foods. They also said the corn was too high on his allergen/reaction list to introduce, so we're going to try carrots. They also suggested rice, tomato and potato, but to avoid dairy, soy, corn, wheat and (of course) egg. We scheduled an additional speech therapy today to pull the corn from Eli's diet and introduce the carrot. He seemed to like them! We will introduce chicken tomorrow!

Thursday, August 30, 2012 - ADAM FLIES IN TONIGHT!!!! YEAH!!! Eli ate blended Mandarin oranges and oatmeal for breakfast again today. He seemed to like it a little better. Then, while Eli was in occupational therapy, I learned how to prepare his foods for when we return home! Eli had blended green beans and NeoCate Nutra flavored with vanilla Elecare for lunch. I think the Nutra is going to be a great substitute for yogurt! We introduced CHICKEN in speech therapy!! It was blended with Hemp milk and Neocate Nutra. Eli actually seemed to like it! YAY! He had it again for dinner! About 8:30 tonight, Eli just told me, "Mom, I think I'm hungry!". he said he wanted applesauce, then he fed himself the ENTIRE CONTAINER!! YAY!!

Friday, August 31, 2012 - Eli had breakfast this morning and did wonderful!! We are all loaded up and headed home!!!!

Well, we've been home fore a couple of weeks now and things are still going really well. In a few days, I will try to sit down and blog an update from the past few weeks since we've been home. Thank you to everyone for being so patient with us as we re-adjust to normal life again! We also want to say another huge thank you to everyone who called, sent care packages and prayed for us while we were in Dallas. We can't thank you enough!

OCH: Week Three

WOW! Our third week at Our Children's House is over! We're in our final week!!! We have a Care Conference on Wednesday, August 29. They should give us our definite discharge date, but it should be Monday, September 3 unless something major happens. If anything, I'm hoping to get out a day or so early so we can have a few days at home to get settled. Crossing our fingers....

Monday, August 20, 2012 - I'm sitting in on all of Eli's feeds today, then I'll start feeding him tomorrow! Eli threw up again today after his 1:30 feeding. Just applesauce this time, no avocado. Adam surprised me by showing up a day early, so he was the one to get thrown up on this time! It was also great timing because he was able to help me and Eli get settled into our new room.

Tuesday, August 21, 2012 - We are all set for Eli's scope tomorrow. We have to be at Cook Children's in Ft. Worth at 6:00 AM!!!! It's going to be an early morning! I'm staying at Baylor Plaza Hotel tonight so hopefully I can get some rest. I also Skyped with Mom and Ryan a few days ago. Ryan told me about some dehydrated apple chips. I told Eli's SLP about them. She was able to buy some and introduced them today. Eli had a really hard time with them, but it's a start!

Wednesday, August 22, 2012 - We went to Cook Children's this morning for Eli's scope. The Eosinophilic Esophagitis is clear, but he has a yeast infection in his esophagus from the medication used to clear up the EE. So we're weaning off that medication and starting a new medication for the next 21 days to clear up the infection. Biopsies should be back in the next few days. Adam also got to feed Eli this afternoon and was very excited!! We talked to Christine with Dietary and Nutrition. Eli is getting about 800 calories during the day so they are cutting his nighttime tube feeds in half, stopping them after 5 hours and only doing 250 cc's. They think they will have him weaned from tube feeds before we leave OCH. Since this is Adam's last night in town, I'm staying at the hotel again and hoping to get LOTS of rest!

Thursday, August 23, 2012 - Adam has fed Eli ALL his feeds today! I'm so proud of how well Eli is doing and it has been such a huge help having Adam here the past few days. I was able to rest well the past 2 nights and am finally feeling better. I will start feeding Eli tomorrow. I'm anxious to also see if they've found any new foods for him.

Friday, August 24, 2012 - I got to feed Eli during his Feeding Therapy today for the first time! He's doing really well. I'm hoping they can find something for him to eat at breakfast other than just applesauce. During Speech Therapy today, Eli ate an apple chip! Dr. Oshutokun's office called today (the GI doctor from Cook Children's). They got the biopsies back and Eli's EE is RESOLVED!! However, there's significant erosion in his esophagus from the EE. So he's doubling the Prevacid dose. He also said that we can begin to re-introduce 1 new food every two weeks. He said to start with the lowest allergen reaction first. He also wants to re-scope in about 2 months. He's scheduled for an appointment on October 16 and scope and biopsies on October 17. Mom, Grandma and Pop came into town today for the weekend, I'm so excited to have them here.

Saturday, August 25, 2012 - Eli threw up during breakfast today. They are going to put him on Carafate to see if that will help.

Sunday, August 26, 2012 - Before Eli's last fe3ed today, he had a little breakdown. He started crying and said that he didn't want to go take his bites; he just wanted to go home. All I could do was hold him, cry with him and tell him that I wanted to go home too. I'm really frustrated that they haven't introduced any new foods in about 10+ days. This Momma's putting her foot down in the morning. We only have one week left and we need more progress!!

Things are starting to wrap up! I should be learning how to prepare food at the end of the week! So proud of Eli and the progress he has made! He is one tough, amazing little guy!! Please continue to send prayers our way as we go through our final week at Our Children's House and prepare to return home!!