It’s been a fast two years. The ordeal of getting Tinleighs tube is now like a dream. Here we are now, with a pretty healthy thriving little firecracker. I can’t say I am completely in love with her tube, I will always have a deep hurt that she had to get one. I can say it has probably been a life saver for her. Tinleigh has grown an incredible amount these last two years. She is definitely a healthy little girl and is getting the nutrition she was missing out on trying to battle EoE with diet elimination.
Tinleigh has a love/hate relationship with her button as well. I would guess almost every EoE kid does. Tinleigh doesn’t really like to use her button. We still do, but given the option she would rather drink her formula. She was drinking the formula before the button was placed but we couldn’t get the required amount down her, thus the tube. She’s always been a very oral kid, she use to graze on food all day long. So I understand why she would rather drink it. We do have our days though when she refuses to drink and refuses to let me hook her up. Those are the days I loathe. She also has days that I could stuff her full of formula but she still wants to eat. Eat real food. She only has blueberries, black olives and cocoa that are considered safe for her. She’s failed almost all of her scopes. I believe she failed 8 foods since getting her tube and has passed 3. She is currently trialing black, white and red beans. How is the trail going? I have no idea. I thought she was passing all of her other foods she trialed. Her scopes told us other wise. She just doesn’t have syptoms that typical EoE kids have. There’s a good and bad side to that. Wonderful she can eat and not be in pain. Bad that she can eat it, not feel pain yet fail. So there’s no connection there for her to not want to eat it anymore. We won’t know until she’s scoped if beans are a pass or fail. When is her next scope? That’s up to her. She doesnt want to go in that white room and doesnt want the doctor to drop that thing in her mouth that she feels down to her tummy. You want to have that conversation with her? Me either. So we’re letting her make the decision right now as to when she gets to try new food. She completely understands you have to get checked to try new food. Unless she starts having problems we’re just going to let things rest for now. If that means she trials beans for a year so be it. It’s not what I want for her, I would love for her to gain more foods. However, this is her life, her disease, and I won’t make it more miserable for her.
Tinleigh definitely lives life to the fullest. She’s in dance class. I’m not sure it’s her thing, don’t get me wrong she’s good, she gives it her all. I think she would rather be playing a ball sport of some kind.
Tinleigh is also in speech. Its her first sort of sit down instruction class. Her teacher has informed me a number of times how much energy and how happy Tinleigh is. I just laugh. She’s very similar to Charlie’s personality.
What do I see in store for Tinliegh this year as far as EoE and her allergies? We’ve noticed she’s becoming more sensitive to her true Ige allergies. This is not normal says our allergist. So what’s going on? We don’t know. As of now it’s just with wheat and diary. She breaks out in hives and goes into asthmatic fits when she comes in close contact or breathes it in. She did have a coughing and sneezing attack last week when I lifted the lid off a roast that had been in the crock pot all day. Beef is a major allergen for her. Was it a coincidence? Who knows. I keep her by my side pretty much all the time. I feel safest that way.
It is not fancy hair, gold jewelry, or fine clothes that should make you beautiful. No, your beauty should come from within you- the beauty of a gentle and quiet spirit. This beauty will never disappear, and it is worth very much to God.
Tinleigh is a very beautiful little spirit. She’s got this.