Surgery number 2!!!!!!!!!

Last Wednesday Jorge had his second surgery here in Boston, and his 3rd fonduplication. It was a very long and stressful day. The surgery started at 8:30 am and ended at 10:30 pm. We were so nervous, but as soon as the doctor came out to talk to us, it was all good news. What a releif! We learned that Jorge's esophagus was not in the right place, and that his diaphragm had to be reconstructed. He had lots of scar tissue too, which made the surgery super hard. His doctor thinks that this time it will really work, and that he might need more surgery for his reflux issues, but further down the road. We were told that when Jorge is ready to go home we will be able to live normal lives. For now we still have a few more weeks to go for him to recover completely and for us to leave the hospital. Also he still needs at least two more esophageal dialationss, but with the help of therapy he will finally be able to eat solids, and within six months we might be able to get rid of the g tube.

I do not really now how long it will take us to get him to eat normally, but the truth is that for the first time since he was born we have been given hope, and have been reassured that everything will be fine!

Welcome terrible twos!

Yesterday we celebrated Jorge's second birthday!!!! We had a great time here in Boston with the family!!!!!
One of our cousins got him a cake and had a little get together at her house. As we were singing happy birthday to him, he got a bit scared and started to cry, I think all the attention just made him feel a little overwhelmed. Once we got to the blowing the candles part, the crying was gone, and he did a great job!!! We have been practicing this for a while for when the big day came!!!

He had a doctors appointment the day before, and we are proud to tell you that he finally started to gain weight!!! He is 11.1 kgs, which is about 25 lbs!!! And he is growing too, he is 86 cms tall!!! Go Jorge and keep it up!!!! Our surgery date also got changed, it is no longer on the 4th, but on the 9th. I was not very happy to hear this, but oh well . . .we have waited so long for this than a few more days will not hurt us!!!

I am also very touched for all the birthday wishes sent to my little man. What impresses me the most is that people that know him, and people that have not even met him yet love him so much. He is one fortunate little guy, and we are more fortunate to be his parents!!!!!

We were really hoping that this year we would be able to throw him a huge party, after all he has been through we feel he deserves it, but I guess this will have to wait until next year!!!!! Again you know what they say three times is the charm, so when he turns three he will have the best party ever!!!!

Help!!!!

Since Little Jorge did so good recovering from his last surgery they allowed us to go home!!! We are staying at Jorge's cousin's (by the way, we need to thank them since they have allowed us to stay in their home for as long as we need to, or until the baby is well enough that we can go back home, we are just so blessed) so this is home for now! He is eating through his jtube, so he has to eat very slow, he is connected to his feeding pump 20 hours a day. This has been driving us crazy since he has to sit on his stroller most of the day. He refuses to carry his backpack, and our options are very limited when it comes to entertaining him!!!!


He will go back into  the hospital on Wednesday to get some exams done, and then on Friday he will have his third fonduplication. You know what they say three times is the charm. Hopefully this time it will work, so he will be able to eat normally. I am hoping once his surgery is done he will remember that eating is pleasant, and that its much better to do it by your mouth than through the tube. If he has forgotten I will have to start taking him to feeding therapy again . . . .I really hope not though!!!!

Yesterday as we were in doors since the cold weather did not allow to take him out, it started to snow. Many people did not seem very happy about this, since it is only October, and winters here in Boston are really cold, but for me it was a gift to be able to show it to Jorge right before we get to be stuck in a hospital for at least two weeks!

Tomorrow is Halloween, and Jorge will be Spiderman for this event. He looks so so cute in his costume!!!! He just does not want to take it off, its really funny. He looks like a mini red and blue bodybuilder LOL!

Tuesday is Jorge's second birthday! We will be taking him to church since it is all saints day, and also singing happy birthday at home with CC and Felipe!!!! I am very happy we get to be home for this and not at the hospital, even though there were going to be more kids there.

Happy tears!

So Jorge had the first of his surgeries! Everything seems to be going great! He has had no fever, no rashes, no leak and no infections! Today also they decided it was time to take the breathing tube out. He was supposed to be extubated yesterday, but doctors just thought he was not ready!

The fact that we were one day behind schedule just made us go into panic mode, all the sudden we found ourselves reliving the NICU nightmare all over again. My nerves were getting the best of me and I just could not relax.

This morning out of the blue he just started needing less and less support, they gave him some lasix to make sure he got rid of the extra fluids, and voila our little man was ready to breath on his own. The Boston hospital is very strict and they have a protocol for everything. They started by taking off the sedative medicines, then they waited for him to be very awake. It took him 2.5 hours to be really awake. Then they called the attending and fellow doctors from surgery, ICU and anesthesia, and then came respiratory. Once everyone was here, they started suctioning him and monitoring his oxygen levels. When they were positive he would not fail, after 4 hours of wait, the tube finally came out.

He struggled a bit at the beginning, he needed a little oxygen support and some suctioning. At this point it was dejavou I felt I was in the NICU seeing him fail after each extubation. I was shocked and scared, but he recovered very fast, and before we even knew it, he was doing it on his own. He started playing, smiling, laughing, showing us how strong and how full of life he is! At this point I just felt like a huge weight was lifted off my back, so I sat down asked the nurse if I could hold him, and once I had him in my arms just started to cry. Just could not stop sobbing, it was all the stress coming out. My tears were happy tears, but I just could not stop.

He is doing great, and for the first time since he was born, doctors are giving us positive feedback, and lifting our spirits. It seems like this time he is finally going to be able to be happy and to feel good.!!!!!! I think the fact that he is older and stronger helps a ton. We just thank God everyday that even though we find ourselves in trouble with Jorge all the time, we always find a solution to fix whatever problem we encounter.

Someone told me a few days ago that God would never give me anything than I cannot handle, and to that I must quote mother Theresa " I just wished he would not trust me so much" (I'm just kidding) the truth is the Lord is good and kind and he gave us the best kid ever. We do not have it easy with the constant travel to the hospitals, but we do have one thing and this is the luck of seeing how God works his miracles through our son. I really do not think many people get to see that in their lifetime!

Once again I cannot thank you all enough for the support and prayers. Our faith and your support is what keeps us going!

I really hope Jorge reads this blog one day! So if you ever read this I just want you to know we love you so very much, and we are very very proud of you little man!

Time Flies!!!

The last few months have been crazy. We moved from Houston to Miami. We have been traveling all around, and as usual Jorge has had a few surprises to throw at us.He had been eating without the use of the tube for about 5 months and then one day he just woke up, and decided he no longer wanted to eat. We tried everything and nothing seem to work, so after two days of struggles we went back to gtube feeds. It really felt like a set back, but in the end we realized that if he had stopped eating, there just had to be a reason.

The not wanting to eat episodes were followed by vomiting, and constant reflux, so we decided it was a wise idea to find a doctor in Miami that could see him. We got very used to the hospital in Houston, and prompt replies from all the medical staff so when we tried to make an appointment, we were kind of expecting the same VIP treatment, but instead we were given an 8 week wait . . . . . not really good when your child has a history of medical issues. To make a long story short, we had to fly back to Houston to have him seen. When he was seen by his doctors we were told that for a second time Jorge had blown his fonduplication, and that we needed to find a new solution for his issues. The solution given was gastric bypass. There was no way we were going to let them do this to him. He has weight and growth issues, he hardly has an appetite, so to me this was just the craziest idea I had ever heard (doctors also suggested he would have to tube feed for an undetermined amount of time). While a solution was found he had a GJ tube placed, which I hate, but it is helping him, he has gained 5 lbs ever since!!!!

After hearing the bad news, we basically put our thinking caps on and started looking for other alternatives. We found a hospital that has a program just for kids like Jorge. They have an esophageal atresia program!!! how cool is that? We immediately started getting everything going and started planning for our trip to Boston. We are not only going to a hospital that has a program that specializes in his condition, but also the number 1 hospital in the United States. How lucky are we???? We are always finding ourselves in trouble with this little man, but at the end of the road God just works his miracles and shows us the way to a solution!!!!

On a happy note, Jorge started school . . . as always he just won everyone's heart and he is loving it to the point that when i drop him off he will just turn around say bye-bye, and walk away. We had two different weddings where he just danced the night away (this boy is going to be trouble all the way), he was the ring bearer at one of the them and did an excellent job. He has been growing and getting cuter by the day, and his hair has finally grown to where the scars from his head surgery can no longer be seen; and he no longer has to wear his helmet!! WHOOP WHOOP to that!!!! We also took him to the Miami Seaquarium, and he just loved the dolphins and Lolita the killer whale, we had a blast!!!!!!!!!!

We are flying to Boston this weekend, and seeing his new doctor on Monday. Testing will start Tuesday, and surgery will probably be the following week!!! We are very hopeful that we can finally put an end to his GI issues, so that we can move forward and give him a better quality of life.

Also we are one month away from his 2nd birthday. We were planning on celebrating this one big, but with surgery in the future we might have to postpone the big party until next year!!! 

Catching up!!!!

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!

Walking Walking!!!!

So finally the day we have been waiting for arrived. LJ decided to let go and walk on his own. He took a while, today he is 1 year, 5 months and 18 days!!!!!!!!!!. He gives many steps, but needs to know someone or something is there to hold him in case he looses his balance. After he gets to either Jorge or me, or to a wall, the couch or whatever he can hold to, he lets go and claps  . . . he is just so proud of his achievements and so are we.

He is also doing great with his weight gain. He is starting to get rolls . . . his double chin is back, and his cheeks are so big I cannot stop kissing and biting them!!!!!!

We are just so grateful to God and to all of those that have prayed so much for him and for us. It has been and will continue to be an amazing journey!!!!

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!!!!!!!