So, I have not been updating lately. I guess life has just been too crazy.
Logan is doing GREAT!!! I feel finally that for the first time in his life he is a (relatively) normal baby that is happy and playful. His oxygen levels are definitely up and it is making a huge difference in his quality of life. He isn’t sleeping all day anymore, and actually he has only been taking a morning nap and afternoon nap lately. He is so much more interested in things. Things that used to frighten him are now interesting and he is much less scared of people.
He still doesn’t let hardly anyone hold him but he won’t scream bloody murder if a stranger looks at him or tries to get near him (just not too close though…)
He is not sitting up on his own yet, although he is getting so close and can now sit in a Bumbo (a soft little seat that gives baby’s support) and is really enjoying this new view of the world. Most people who meet Logan ask if he is 8-10 months old. I do agree that is about what he looks like physically. He is still in 6-9 month clothes and 3-6 pants. Believe it or not though, he has officially staked his claim on the weight chart. He is registering in at about 1-2% but I will take it! Much better than his previous -45% place. For height he is about 20% and I have to say it is all in his head and torso. He still has puny little legs that are still curled up most of the time.
Logan still does not eat food. I am okay with this. He has an incredibly small stomach capacity (which is a know heterotaxy thing) and is not comfortable with the feeling of anything touching his throat. Before in this life things that touched his throat were NG tubes and ventilator tubes, so he has a pretty strong visceral reaction to things being swallowed. He is okay with food that almost melt in his mouth. Rice starch biscuits are his favorite. He occasionally will nibble a tiny piece of cake, but this airy/starchy/dry texture is the only texture he will allow near his hand or mouth. If I hand him something that is cold, slippery, wettish, warm, surgery, cheesy, or any other texture other than room temp and dry, he acts completely repulsed by just the feeling in his hand, let alone put it in his mouth. Just so you know (and everyone asks this…) yes! I have tried pasta, fruit pieces, vegetable pieces, cheese pieces, chicken, egg, toast, pancake, waffles, french fries, cereal, pudding, pediasure, chocolate milk, ice cream, yogurt, and anything else you can think of that seem like it would be ‘baby friendly.’ He literally only wants rice biscuits, cheese puffs (but not the really cheesy ones), and these new vege stick things. That Is It.
occasionally I will get him to nibble on various foods…I have had luck with a cucumber slice, a french fry, a cheese it, and a green bean. However, as soon as he tries to swallow these ‘non-melting’ foods he begins to gag, choke, and then vomits. And then vomits some more. And more and more. I am not going to stop trying though, although I am taking things very slowly because it is a very fine line between encouraging and in a positive way and reinforcing his negative emotions with food.
I am secretly very happy that no one wanted to attempt a Gtube on Logan. Although he may have put on weight quicker I think that it would have perpetuated his eating issues and I have heard nightmare stories of 4 and 5-year-old that still don’t allow food in their mouths. Slow and steady is what is going to win the food battle with Logan. I think it is hard to see how skinny he is unless you see out of clothes. He has no little baby rolls just skinny arms and legs. Also, doesn’t his incision look great??? Dr. Del Nido…LOVE YOU!!!!
If there was one picture that could describe how he is doing right now…it would be the following. Just two months ago Logan would never have smiled like this. He smiled occasionally but never with that much joy. Just a short two months ago, he was scared of taking a bath, he was scared of all people, he was scared of new noises, textures, places. He slept all day long and needed to have his blanky, binky, and his swing just to feel secure.
Now today at 15 months he loves the bath. He loves going places. The wind blowing on his face doesn’t make him cry anymore. He is somewhat more tolerable of people (just don’t touch me or get too close please…. 🙂 and overall for the first time ever Logan is joyful. You can see it in this picture…