Bye-bye g-tube

It has been two days since LJ last had any food through his g tube!!!! I could not be more excited, I am feeding him 6 times a day, and he seems to be taking it well. He is not a fan of baby food, but I have found out, that if I mix it with milk, then he eats it, and does not even complain. He has also been eating crackers, some baby snacks, baby pasta, bread, and we gave him french fries too.

We still cannot get rid of the g-button, he still is not eating as fast as he needs to, and also he might get sick and not want to eat, so the g tube is always an option. I do not mind it being there, just knowing that he does not need it, is a great blessing.

We are also getting ready for Thanksgiving dinner. It is not his first one, but the first one at home. I am planning on giving him turkey so he knows what he has been missing out on!!!

I am one year old!!!

It has been two weeks since the baby's birthday, and our life does not seem to get easier!!! Jorge is everywhere, wanting to grab everything, crawling like crazy, giving a few steps, throwing full blown tantrums . . .man it cannot get any better than this!!!!!!

We are doing great with his eating, I am now only giving him two bottles of milk through his g tube, and the rest of the food he takes orally. We found a bottle that instead of having a nipple, has a spoon, so we have been giving him milk with that, and it has been working fine, if I can get him to drink 4 of those a day, and 5 more meals, then we are ready to get the g-button out and finally go back to normal., meaning being able to go home and stay at one place, have some vacations without having to carry two suitcases filled with medical supplies!!!!

Jorge is growing super fast. He is 75 cm long, and weighs 9.2 kg. He is a very tall little boy, yet is very very thin. Doctors have told me that he is just a thin boy, but his weight is still in the 50th percentile, so I should not worry. He has to wear belts because clothes that fit his length do not fit his waist, and if it fits the waist, then it looks like if he is wearing capri pants!!! LOL

We are still in Maracaibo, we think next week we might be heading to Colombia, and then finally back home, after the holidays we might return to Colombia, and stay there and just travel back to the States for the baby to get his medical checkups, but again we no longer plan our life, LJ just tells us what we have to do, and then we do so!!!!!

Ma-ma!!!!

I never thought this day will come . . . he said mama for the first time today!!!! He says words like ta-ta, te-te, pa-pa, ba-ba but not ma-ma!!! It feels great . . I almost cried!!!
He is also teething some more, he has two teeth coming out on the bottom, and three coming out on the top part of his mouth . . . he is drooling like crazy, and has been kind of cranky, poor thing must be in pain!!!

His eating is improving by the day, he is eating faster, and more, he no longer cries . . . so the process is much easier, and I have been feeding him 5 to 6 times a day now.

Happy Birthday Little Man!!!

This week was the best week of our lives. We celebrated LJ's first birthday!!! We had so much to be grateful for. We could not believe how fast time has gone by, and could not help but remember that only a year ago we were at the hospital praying for our little guy to live and to do well. Today that is all in the past, we have a healthy little boy that is full of energy and that definitely keeps us on our toes!!!

We are very happy because we have been able to finally see lots of progress in LJ's eating. We are down to three bottles a day via g-tube, and the rest he takes by mouth, I think he is now taking 50% of his feed orally. I have been very strict in his eating habits, and this has caused a large amount of stress on the both the baby and myself, but after four long weeks of struggling, crying, and lots and lots of messes, we are finally heading towards the end of the baby's g-tube feeding!!!!

We had a small birthday party. There were just a few kids, but we had a pinata, and cake, and celebrated it like we do back home, and the best part of it we were here at home. We had my mom and sister come from the States, and also Jorge's mom, dad and his brother Daniel, with his girlfriend Fabiana!!! We had great grandmothers, and great uncles and aunts, cousins, many many family members celebrating with us the miracle of life.

On Sunday, Jorge had his first Halloween. We dressed him up like a monkey. He was not thrilled with the outfit, but he looked just so cute. We are in Maracaibo, the temperature here is very very warm, so I just put him in his suit for pictures at home, and then took it off. I thought we would be either in Colombia or in Houston for this, and thought that the weather would be cold, so bought a very warm costume. At least I was able to get some pictures!!!!!

We also realized that on Friday, it had been a year since we baptized the baby at the hospital, and that for the first time we were able to take a picture of the baby with his godparents. Since the baby had his first surgery 5 days after his birth we had to do a quick baptism ceremony, and the godparents were not able to come, since the baby arrived 9 weeks early!!!!!!!!

We have been lucky enough to find helpful hands along the way, to make Jorge's recovery fast and as easy as possible on us. We know he will not remember any of this, and we are grateful for that, but for us, even when we know it could have been a lot worst than it is, sometimes it seems like we cannot take it anymore, and then just like that something amazing happens, and it seems like its a breath of fresh air to help us keep on going!!!!!

We still have no idea as of when we will be returning to Houston, but we sure miss it!!!

I don't like to eat!!!

We are still away from home. I just do not know what to call home anymore, but at least we are together as a family, and for now that is all that really matters. LJ is finally caught up with his developmental milestones. I no longer go by his adjusted age, he is now a almost 1 year old boy. His walking is improving, but he still cannot do it on his own. He is babbling a little more, and sometimes says "Ma", we are just missing the other half . . . . LOL  . . . I know anytime soon I will here him say it!!!!

He is doing better eating wise. We have his spitting under control. We are giving him more food through his mouth, and trying to get rid of the g-button. I m giving him 3 baby food bottles a day. It takes me about 45 minutes to an hour to feed him, and a lot of fighting with him, but he is getting better. At the beginning there was no way I could put the spoon in his mouth, and his hands would always  make me drop the food everywhere. Also he would not stop crying, and sometimes I would cry with him, but now I have been feeding him with no distractions, and even though he is still not a fan of the spoon, he will let me put the food in his mouth, and he will do the swallowing.

He is no longer scared to put things in his mouth, he has had rice, crackers, cereal, arepas, yuca, anything we give him goes in his mouth, some he likes and chews on, some just go straight to the floor. My does go by, and it seems all I do is feed him, but I am hoping that sooner than I realize it, he will just eat normally, so we can go back to our routines.

We have been seeing lots and lots of family and friends. Jorge's childhood best friend's mom is a speech therapist, so she has been helping us with the baby's issues, and he has been improving thanks to her guidance and advice! We have been blessed with amazing people, that have been wanting to help us along the way. LJ is one lucky little guy!!!!!

We are currently in Maracaibo, Jorge's hometown, and while here we have been having lots of fun with his family. We need to give a very special thank you to Helena, she has opened her house to us, and has made it feel like home. We have no words to express how grateful we are . . . . We also thank all those people who have given us the tools we have needed to allow LJ to come this far!!!

Changes and more changes

We have been traveling. Right now we are in Colombia, the weather is beautiful, and the baby is enjoying every second of it. The baby is doing great. He is now starting to walk, he cannot do it on his own, but if he can hold himself to the sides of his play pin, or if he holds our hands he can just go!!!!!

He is now saying a few more words, Ta-ta, Da-da, and Pa-pa, ma-ma is no where to be heard. If i tell him say ma-ma he says pa-pa, and if I say not pa-pa, ma-ma he looks the other way. I will keep on trying until I finally hear it.

He also learned to give kisses, if I say give me a kiss, he will smack his lips. He is really funny though, he does it in pairs, he cannot give me one kiss, it has to be a minimum of two!!!! He just melts me every time he does it, and usually a big smile will follow those great sweet kisses.

Eating wise we are still not doing great. He does not seem to want to eat anything. I have to work harder on this though, hopefully sooner that I know he will be eating. The baby had been acting really weird. He would cry during and after feeds, so I went online to see what could it be, but could not find a thing, called his pediatrician, and again they had no answer. They thought it could be the flu, and then finally, while I was reading the news, I realized that the milk he takes had been recalled. I changed brands, and tried a different type of milk, instead of giving him soy based formula, I tried AR  formula, a special type to help with reflux, but he did not take it well, and got kind of sick, so we had to go back to soy, we just switched the brand from Similac to Nestle, Enfamil makes his stool too liquid, and then we end up having accidents everywhere, so this was not an option!!!!!

We also bought him some party supplies for his birthday, I cannot believe that in a month he will be one. Time just flies. A year ago I was just wondering how he would look like, and hoping he would be fine. Today I am just grateful that I have my little man, and that he is doing so so well!!!!!

I like to move it!!!

This week we had my cousin visit from Australia. She got to meet LJ, and it was also fun to catch up. During the first two days it was hard to get out because the weather was just nasty, but then the last two days were just amazingly beautiful.

We went to therapy, to eat cupcakes, to the Downtown Aquarium, to the museums, we just had so much fun. I also took my cousin to therapy with us so she could see what it was like. Jorge loves going to therapy, he thinks he is playing, so he has a blast, and he gets lots and lots of attention from all the ladies.

Jorge has been eating a bit more, not too much, but more solids at least. He seems to like pudding, and I also gave him sweet condensed milk, and chips, and anything he would want to put in his mouth even if it is non healthy, and fattening! He takes some stuff, I guess he is not yet aware of what he is missing out of.

He learned to stand up on his crib, and is also starting to give a few steps with our help, but he is also very hyperactive all the time, and is sleeping less and less. He has been waking up at around 10 o'clock at night, and decides that he wants to play. We try to ignore him, but he just starts throwing things at us, so that we will look at him, and at the end he wins us over, and we just give in. Last night he decided it was a good idea to babble, and scream, and bang his toys against the crib at 4:45 o'clock in the morning. I could not even open my eyes. His daddy decided he would try and put him back to sleep, it took him like three attempts before he finally went back to sleep. I slept through the whole thing  . . . . I am starting to think I am overstimulating this kid.

He is doing lots of different things. I love for him to show everyone all his tricks, so he has decided that when he sees someone that's not me or Jorge, he just does all his tricks at once, and then pretends we are not talking to him. I am thinking he is trying to tell me to stop embarrassing  him. I do not want to imagine what he is going to be like when he is a teenager  . . . lots of fun huh??????

He has mastered his crawling and sitting, and says Da-da, and Ta-ta all the time, all day long. He can also wave hello or bye, and plays games with me. He understands when I tell him to stand up, and then if I tell him to fall down, he will just follow my instructions. I am just so in love with him!!!!!!!