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!!!!!!!

I am growing too fast!!!

I can clap!!!!!

Jorge has been achieving more and more of his developmental milestones. Today he learned to do something new. He can now standup on his own while using his crib rail as support. We are super excited to see how much he has improved in the last week, but now we need to get our apartment baby proof ready. We have nothing, our electric switches are exposed, he can open our kitchen cabinet doors. He can basically tear up this place.

His crawling is getting better, I think it hurts his knees a bit. They always end up really red, and he seems upset sometimes. I am glad he learned to crawl. Everyone kept emphasizing on how important this step was, so if he decides he is done, I think I will not worry too much, but instead encourage him to begin practicing his walking.

We also are super happy because we gave him a piece of chicken nugget, and he chewed and chewed until it was completely gone. We have been giving him finger food so he can decide whether or not he wants it, and the fact that he has control over the situation seems to be helping. He has been eating more. I use to force baby food in his mouth every day, but I decided to let it go a bit, it seems to create stress on him, and it does the same to me. He will eat when he is ready, and there is no need for me to push him so hard.

I am just very proud of my little boy, and of every person that has worked with him. It is all the team work that has allowed him to come this far. I also have to pad myself in the back. I never thought I would be able to care for a child with special needs, and here I am the proudest mother in the world. I have learned to understand that he will not always have good days, but instead everyday Jorge will let me know what he wants and how he wants it, and I just need to be there for him.

When I first learned about Jorge's condition, I felt lost, I could not understand why this was all happening, and then a very special person had a message for me. He said "Special babies seek special parents". Today I feel lucky that Jorge chose me. I now feel special, because I have such a wonderful son, and finally understood what Father Pedro was trying to tell me. God was not punishing me, he was rewarding me!

I now we still have a long way to go, but every little smile of that boy is the fuel that keeps me going!!!!!!

I can crawl!!!!

So today was one of those days that started awful and ended amazingly great. We had been waiting all day long for results on a kidney test they did on the baby. They found glucose in his urine and this did not look good. I think I called the doctor's office about 4 times, and then Jorge called another 4 times until the doctor finally called us with results. The waiting to see how his kidney was working, whether or not it could be diabetes, or if it was just another genetic condition; was driving me crazy. I did not want to get out of bed, I was just so sad, but then, we got the call and thankfully it was good news. He is doing just fine. It was just a scare, everything is perfect, and his kidney is functioning better than two of them together!!! He also started crawling, and he learned to sit up, all in one day. We are just so proud of our little guy!!!!!

Happy Birthday Mommy!!!

My boys and my gifts!!!!!

This past week was my birthday. Jorge and LJ went shopping for my birthday gifts. Since I turned 30, they decided to give me 3 gifts. Jorge gave me two gifts himself, and then hid really well the gift that LJ chose for me! It was fun to search around our apartment to see what it was!!! I got a new picture camera, matching earrings and bracelet, and a watch I had been wanting for a while. The same day of my b-day my brother and law and his girlfriend arrived, they took me out for lunch, and then at night we were so tired that just decided to go to Chili's and have one of my favorite desserts, a chocolate molten!!! They sang happy birthday to me, and then we went home and slept!!!!
LJ has been doing great. He has been learning more and more tricks. He can clap now, so we love to show everyone all the things the baby can do. We just cannot wait for him to start crawling, he is about to. It is just a matter of time. We are still struggling with his eating, but we will get there sooner than later.
On Saturday we went out and celebrated my birthday with some good friends. We took the baby, he was just so good. He just sits and plays in his stroller, and allows us to enjoy. I could not have asked for a better behaved baby.
I have been trying to decide what I want LJ to be for Holloween. I have been thinking to dress him like Woody from ToyStory . . . still undecided. I guess as I do some more shopping I will find something that I just will love.

I can talk!!!

We just came back from our trip to Colombia. Jorge has been very active, he learned how to go from a sitting to crawling position, and he keeps shifting from one position to the other. He has also started to vocalize, its more like a scream, but he will say Aaaaaaaaaaaa, or ooooooooo, and finally last night he started saying two syllable words. . . he said Ta-ta and Pa-pa which is daddy in spanish!!! we were super excited to see him finally starting to talk, I was a bit upset that he said pa-pa before ma-ma!!!! LOL!!!!

Slow and steady wins the race!!!

We have been in Colombia for the past 3 weeks. Jorge has been improving tons. We have been working really hard on his feedings, but still have not able been to get to that place where he just enjoys eating, and where food is a normal daily activity, and not a constant struggle. I know we will get there, I just need to be patient.

He has learned lots of new tricks. He can wave hello!, he turns from his back to his belly, he reaches for his feet, he picks what toys he wants to play with, he maintains his balance when sitting, he sits as he reaches for objects above his head, he nods with his head (sometimes), he sits up on his own when on his stroller, he can get into crawling position and rock himself almost ready to start crawling, he can stand up on his own when grabbing your hands . . . he has learned so much in this past month that we are just truly amazed of what a strong little man he is.

I did not want him to stop improving, so I found therapists here that could either help him get better, or at least not go backwards. They love him so much, there is just something about him that attracts people, I cannot explain what it is, just hope that as he grows he gets to use this special thing for something good!!!!!!!

We also introduced LJ to Sussy (our dog). We were a bit nervous at first. We did not know if she would not like him and try to bite, or if he just would be scared and not want to have anything to do with her, but they bonded since the first time they met, It was just super cute!!!!!!

He has been spitting a lot, we are a little bit concerned because we do not know if his fonduplication is loosen. We are afraid that the reflux will make him stricture more often than normal, so as soon as we are back first stop will be Dr. Tsao, followed by his pediatrician, pulmonologist, GI doctor, nepfrologist, and any other doctor that I might be leaving out, it will be two very hectic weeks!!!!

LJ's grandparents came to visit, we had a lot of fun. they loved that the baby can now interact with them, and respond to games, they were holding him all the time. The baby just enjoyed the attention so much, they left last night, we feel kind off lonely, but hopefully we will have some more visitors coming our way soon!!!

Jorge is just a very happy baby, he is growing super fast, and changing everyday!!! We are very blessed to have him in our lives!!!!!

Enjoy the pics!!!

Jorge the Jet setter!!!

The last two weeks have been crazy!!! We had been preparing for a long trip with the baby. I had to pack a few days ahead of our departure dat to make sure nothing was left behind. Traveling with a baby is hard, traveling with a baby with special need triple hard.

We consulted with LJ's surgeon to make sure we could leave for a month, and decided it would be good to get a dilation before we left. We were not super happy with the idea, it was just going to make my week more complicated. I had back to back therapy appointments, I had to do packing, laundry etc etc, last minute shopping, and a dilation!!!! but in the end it al worked out great, and we were able to get everything taken care of!!!

We took LJ to get his first haircut!!! We went to a kids place, they had TV's, and little chairs that looked like racing cars, he was really into the decoration, not so much into the haircut, he cried, and screamed, and moved . . . we made a video, this will be a great memory, but the end result was great, our little man looked just too cute!!!!!!!!

The day finally arrived for us to leave for a nice relaxing week to Aruba. Aruba was not in our original plans, we were only going to go to Colombia, but we decided to celebrate my husband's grandparents 50th anniversary. We had a great time, and were able to rest. The party was great, we dressed the baby in the mini version of Jorge's outfit, they looked super cute!!! Everyone was super excited to meet him, and see how much he had grown, and progresses. This kid is very special, he has so much people praying and loving him. God only knows what he will become in life, but we are sure it is going to be something great just like him!!!!!

We took him to the beach for the first time, he loved it. We bought a baby floating device, or lifesaver (however it is called), he just sat there and relaxed. He was really into the waves, the scenery, the water, everything the beach had to offer, he even liked feeling the sand. He just had a great time, and so did we. Watching him grow and change so much is just a blessing.

So our Aruba stay came to an end, and we had to get everything ready for our flight to Colombia. Well thing went OK!!! We had no delayed flights, we had great seats on the plane, but as we were getting ready to leave we realized we had a 3 hour connection in Panama!!!! We sat for 3 hours until it was time to go home!!!! We arrived a little bit late, and Bogota was freezing. We went from 100 degrees to 50 degrees . . . . and of course we were not prepared so now we are home and LJ has a bit of a cold. Thankfully we brought his suctioning machine, and it has been really good!!!!

Last night we put Lj to nap on our bed. It was not a great idea. First he had a wet burp or a huge spit I would have to say. It got all over our sheets . . . and then, he peed so much, that it got out of his diaper, and once again all over the sheets!!!! Amazing huh?????? This kid may have just one kidney but it sure does work for 3!!!!!!!!!! LOL!!!!

Last night he turned 9 months old. Like every month we made a little sign, and started taking pictures!!! LJ decided to hold his sign, pose for the camera, and then after he got tired of doing that, he decided he would eat the sign!!!! He eats paper, blankets, toys, my fingers, nut when it comes to food, he decides to shut his mouth or blow raspberries!!! He is quite a character!!!!!

Enjoy the pictures!!!

Getting Ready!

So we are getting ready for a nice vacation. We are going to Aruba for one week. It is Jorge's grandparents 50Th anniversary and the entire family will be meeting to celebrate.

We spoke with little Jorge's doctor, and he decided to dilate him today. We were concerned because we were hoping to be able to give him 8 weeks before his next dilation, and only 4 had passed, but the doctor explained to us that because we were going to be out for a month (we are going to Colombia too) that it would be better to just do it and have peace of mind.

The baby has learned to extend his arms when he wants to be held, or when he wants to get out of the car seat or the stroller . . .it is the cutest thing. He is still not eating much, but it is a patience game . . . .. sometimes I get frustrated because I feel I have no control over anything, I cannot make any decisions without changing my plans, and then I realize that this is not about me, but about the baby, and after I cry or throw a fit, then it is all good and I am ready to get going with whatever life has to throw!!!!!!!

We are doing really good. Little Jorge (we have decided to call him LJ shorter and easier) is developing great, he is caught up on his developmental milestones. If I hold his torso he will crawl a bit, he just has no strenght in his arms, so PT is working on that!!!! He is becoming a very social baby (just like his mommy . . . LOL), and is very active, he is sleeping much less, and waking up at 6:45 every morning!!!!

Because of his condition, he tends to retract his tongue to protect himself from reflux. He is babbling, but not in a conventional way . . LJ has his own way . . .Not at all surprising . . .after all its Jorge, and I have to remember there's Jorge's way and then everyone else's way!!!!!!!!!!!

This weekend was a bit different too. My husband had to travel, and for the first time since he was born, I was left alone with him. I had always been able to have someone come over to help me, or travel to my mom's for her help. I was anxious, nervous, but it was a great experience, I have no energy whatsoever though, he really worn me out, but it was great to bond so much with him!!!!!

Right now we are at the hospital, and he is smiling to every person that stops and says hi to him, it is just so cute, and since we are regulars at Pedi Surgery, everyone knows him and spoils him. It is a great feeling to know that everyone just loves your kid, it makes you feel you are doing things right!!!!

That is it for now, I will post new pictures later!!!!!

He is growing so fast!!!

It has been a while since i have posted any updates. We have been so busy. Jorge has therapy everyday of the week. He has Speech (eating) therapy Monday, Wednesday, and Thursday. He has Physical therapy on Tuesdays and Thursdays, and Occupational therapy on Fridays. He does not love it, but it is really helping. He has improved so much.

We also celebrated Fathers day. We stayed home, and enjoyed a day full of sports. That was my husband's wish, so it was granted. I bought the baby a bib that said Happy Father's day . . . a card that we could record on, so I made the baby cry, and then recorded his cry so that his dad could keep it!!!!!! It was a fun day!!!!

We had to go to the hospital so that little Jorge could get another dilation. We went from two weeks to 3 weeks, and then to six weeks, and now it seems as if we are going to be able to stretch it to every eight weeks. It is a great feeling to see so much improvement. He is now starting to eat. He will take up to 10 spoons of baby food, but he learned to blow raspberries, and half the food he will just blow out!!!

We have also been able to enjoy the Soccer World Cup fever . . . . we bought the baby Italy and Spain outfits to match ours. We are fans of these two teams . . . . we have had a blast!!!! We have been watching games with some friends and their kids and the baby just seems to be having a blast. He tends to get a little mad when he does not get 100% of the attention, we are trying to work on that!!!!

We celebrated our first 4th of July, that day, my husband had to travel to Colombia, and I went to Florida to see my mom and sister, and some friends. We had a great time. My oldest brother was finally able to meet the baby. I had a few play dates. The baby had so much attention, that he learned to throw his arms at you when he wants you to hold him, or when he just wants his mommy or his daddy!!!!!

The baby seems to have a thing for phones. Since Jorge was out of town, I would make him talk to the baby, the baby would get excited and start looking for him, when he realized his daddy was not anywhere near sight he would just start crying . . . it is the cutest thing to see how much he misses us.

I had to travel alone with the baby for the first time. It did not go too bad except for just one thing. The baby decided to poop right before boarding, and it was a blowout diaper. The poop was everywhere. It was not fun to clean and change him on a little changing table at an airport public restroom. He seems to know when the perfect time is to do these things . . . it just shows me how fun his teenage years are going to be . . really looking forward to that!!!!

Yesterday, we went to visit some friends to watch the final match for the Soccer World Cup, we had so much fun, the baby was dressed with his Spain outfit. We feel very lucky to be able to do so many things with him, and that he behaves so well!!! We had a rough start, but with time everything just gets better and better!!!

Enjoy the pictures!!!!!!