A few steps!

The past two weeks have been complete insanity. LJ was having bad reflux, he was not gaining any weight, and stopped growing. We were so worried, that decided to take him to see Dr. Tsao to see what he thought. He had a barium swallow done, and there it was . . .he had a hiatal hernia, and his previous reflux surgery or fonduplication was no longer working. Right then we knew that he needed surgery one more time. So we went to see his doctor and sure enough we got scheduled for his surgery.

We had very mixed feelings about this. We knew he needed it, but did not want him to go through the pain of the recovery, but at the end we decided to go for it. The surgery was supposed to last 2 hours. It was so complicated that it took doctors almost seven hours. We were in panic mode while in the waiting room, but thank God, it was all good.

He had a few complications like an infected epidural, and also dehydration, and some diarrhea, it took him a while to get on full feeds rather than continous feeds. After a 10 day hospital stay, we are once again at home, and he is reflux free!!!!!!!

We went to babies r us and got him a device called walking wings. It helps him walking by allowoing him to find his own balance because his hands are free. We took him to the gym at our apartment building, and made him walk on the treadmill. We did it on the slowest settings possible, and only for five minutes. He was not happy with this, but he had no choice but to walk or else he would fall. We put him on the floor, and then made him stand and walk with the help of the harness. Jorge was standing on one side, and I was helping LJ one the other side. We let go of the harness and then there it was . . .LJ gave his first steps on his own. It was eight steps, and to us it seemed like he walked a whole marathon. We were just so proud!! This happened on Tuesday, March 22, 2011 a day we will never forget.

Yesterday we repeated he same exercise, this time he gave 12 steps. He still does not take the initiative of doing it when we don't force him, but who cares .... He can walk!!!!!!!

Life is good!!

We have been traveling like crazy. We spent the months of October and November in Venezuela. December between Houston and Miami; January in Venezuela again, and February in Colombia. I always said that my dream was to be able to live in different places, see the world and learn different cultures, but had no idea of how hectic our lives would turn out to be. The good thing is that no matter what, we are always together.

The baby is doing well. We are working on his feedings still, he was eating all his meals by mouth, but strictured again. We went in for dilation #16, and after that he would not want to eat again. We started form scratch one more time, and once again we got him to eat 8 oz of food in 20 minutes, but yet again he decided he would not eat a thing. He opens his mouth big and wide, accepts whatever you give him but he will not swallow.  We were going crazy over this, but realized his reflux was so bad that swallowing was painful. He has been spitting with every meal, we are back on Prevacid again. He is still not eating right, but we have faith that he will get there soon.

As for his developmental milestones, I think he is where he needs to be for a 15 month old little boy. He babbles a lot. He learns fast too. I am working on teaching him body parts, so far he knows teeth and nose, we are working on the eyes, hopefully by the end of the week he will master that. He can walk with support, but still wont do it on his own, I think his legs are a bit weak, so tomorrow I will start physical therapy again.

I am taking him to mommy and me classes. It is great for him. He plays with the other kids. They teach him songs, to put away the toys after playing. They play instruments for the kids. It is a lot of fun, and I also get to chat with the other moms, as the babies play. That is the one thing I  missed from the hospital!!!!!!

We have been thinking about getting rid of his g tube, but after much thinking we realized that it is not safe for him. We cannot predict when he will stricture next, and if it happens while we are traveling, it would mean hospital + needles + ivs. He already went through hell and back, so we will not do this to him. I guess he will have it until he is three. He has had since birth, so I think it bothers me more than it bothers him!!!!!

We are a month away from the anniversary of the day LJ got to go home. We are still  learning to take life one day at a time, and to understand there are good days, ok days, and terrible days, but we always find comfort in knowing that no matter how bad our day was,  we always have tomorrow to make it better!!!!!!!

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!!!