We have been working hard on LJ's development. We have been through months and months of therapy, nonstop at home workouts, and constant stress. We now feel relieved to see our work is finally paying off.
LJ is walking, eating, and doing everything a one and a half year old should be doing!!!! He is finally starting to talk. He can say words like mama, and papa, light, ball, grandma, bye-bye, oh-oh, baby, ta-ta, nene, here and there; he makes some animal sounds as well. He can also communicate very well by pointing at things, he will let you know exactly what he wants, and will drive you nuts until he gets what he wants.
Eating wise it has been 3 months since we last used his g-tube, but we will not have it taken off yet. He is still stricturing and we do not want to have to rush to the hospital because he cannot eat or drink a thing. He can drink anything, and his foods are basically pureed, very little solids, but its ok . . . we will get him to eat everything eventually.
We have been having the hardest time with his weight, he eats more than 1200 calories a day, and still looks thin as a stick. We are not concerned because he is getting taller, so we know he just has a very fast metabolism and basically burns more calories than your average person.
Regarding his health issues I think we are doing good. Jorge has had a total of 25 surgical procedures, out of which six have been big surgeries. He had surgery a month ago for a defect called craniosynostosis. Basically they removed his forehead bones and reconstructed it. He still does not look like himself, his eyes are really swollen, but he is feeling great. We learned the craniosynostosis can cause headaches, and this is why he was always hitting his head against the floor and the walls, my poor baby if only he could talk!!! He is wearing a helmet now, it will have to stay on for about 2 months, hopefully this will be the end of surgeries and we will be able to relax for a while!!!
I am so so happy that my boy is doing so well, we have had many bumps along the road, but we are still very blessed to wake up each morning to see our angel laugh and play, and we know that this will soon be over and he will have a healthy life, and that he will one day grow to become a wise and noble man!
