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!!!
