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!
