Wednesday, August 28, 2013
And She can stand!
Alana just turned 7 months yesterday, and today she already started pulling up! She hit her eye while attempting to do this . . . . This little girl just keeps on amazing us. Jorge is also doing awesome. His speech keeps on getting better, and finally he is eating like a champ! At school he eats as much as the other kids, and in the same amount of time. Both my kids are just champs! So in love!
Sunday, July 21, 2013
A whole new World!
So a lot has happened in the last year. To begin we got pregnant had a baby, and are now going crazy with both kids. We were blessed with an adorable little girl, and we named her Alana Sofia!. She is just perfect, the most sweet baby ever. Jorge has also been doing great, he has grown so much. He is now a big brother/ big boy, that is fully potty trained, that no longer has a gtube, and that sleeps in his room in his big boy bed. He is super smart, super cute, and has quite a temper. I am told that this is to be expected, he had to learn to fight to survive, and it became part of his lifestyle.
We have been working hard on his speech. He can communicate, but he has trouble with his pronunciation. He has a few speech disorders, like changing the c sound for a t, and also deleting syllables, but overall, he is doing great. He is also playing sports. We have him in tennis lessons, and also he has been learning how to swim! On the health issues we finally got his GI system working properly, we are taking a break from dialations, and it seems its for good! We now have one more problem to tackle, which is to remove a cyst in his bladder, and then I think he will no longer need any more surgeries, at least not for now!
He is the most amazing brother, he just adores his baby sister. He likes to help me with the bathing, diaper changing, and even the feeding. He does get a bit jealous sometimes, but for the most part he has been super good!
The baby is also a super star. She is so advanced for her age. She lifted her head almost a week after she was born, also she was born with her eyes wide open, and was able to stay awake for 4 hours straight the night she was born. She started putting weight on her feet by the time she was 2 months. At this same time she started turning from her belly upwards. She also learned before she was three months to hold her bottle. At three months she was also pushing upwards, and standing with assistance. At four months she was already sitting and rolling, and at 5 months she already started crawling, its more like a snake move, but she is moving all over!
Both my kids just continue to amaze me. Jorge is such a bright kid, and a fighter, he was able to learn to crawl, turn, lift his head, sit, stand up, and give steps, in three months, I think it is amazing specially considering that he was in the NICU for 5 months, and also was hooked to a ventilator for most of this his stay there, and then my baby girl, she is just a very curious and fast learning little girl. They are just out of this world.
Jorge was such a good sleeper. Since he was tiny he was very well behaved and calm. Alana on the other hand is wild, loud, won't sleep. She is the opposite of what her baby brother was, but like I always say I would not have it any other way! I am just completely in love with my family!
We have been working hard on his speech. He can communicate, but he has trouble with his pronunciation. He has a few speech disorders, like changing the c sound for a t, and also deleting syllables, but overall, he is doing great. He is also playing sports. We have him in tennis lessons, and also he has been learning how to swim! On the health issues we finally got his GI system working properly, we are taking a break from dialations, and it seems its for good! We now have one more problem to tackle, which is to remove a cyst in his bladder, and then I think he will no longer need any more surgeries, at least not for now!
He is the most amazing brother, he just adores his baby sister. He likes to help me with the bathing, diaper changing, and even the feeding. He does get a bit jealous sometimes, but for the most part he has been super good!
The baby is also a super star. She is so advanced for her age. She lifted her head almost a week after she was born, also she was born with her eyes wide open, and was able to stay awake for 4 hours straight the night she was born. She started putting weight on her feet by the time she was 2 months. At this same time she started turning from her belly upwards. She also learned before she was three months to hold her bottle. At three months she was also pushing upwards, and standing with assistance. At four months she was already sitting and rolling, and at 5 months she already started crawling, its more like a snake move, but she is moving all over!
Both my kids just continue to amaze me. Jorge is such a bright kid, and a fighter, he was able to learn to crawl, turn, lift his head, sit, stand up, and give steps, in three months, I think it is amazing specially considering that he was in the NICU for 5 months, and also was hooked to a ventilator for most of this his stay there, and then my baby girl, she is just a very curious and fast learning little girl. They are just out of this world.
Jorge was such a good sleeper. Since he was tiny he was very well behaved and calm. Alana on the other hand is wild, loud, won't sleep. She is the opposite of what her baby brother was, but like I always say I would not have it any other way! I am just completely in love with my family!
Wednesday, May 30, 2012
Potty Training!
So we began the training for Jorge to finally get rid of his diapers. Today was the first day and he went three times in his potty!!!!
The first time was early int he morning, I made sure the room was really cold, and turned on the water, took his diaper off, and sat them on his Elmo potty, And two minutes later, he went. We were so excited and cheered for him so much, that the second time he took his diaper off, and told me he wanted to go to the bathroom, the lights were off, so he would not go in, so as soon as I turned them on, he went in and peed a bit on the floor, I quickly sat him again, and he finished in his toilet. The third time was after his nap, he went like a pro!!! I think the first day went awesome, at this pace, he will no longer use diapers very soon!!!!!!
The first time was early int he morning, I made sure the room was really cold, and turned on the water, took his diaper off, and sat them on his Elmo potty, And two minutes later, he went. We were so excited and cheered for him so much, that the second time he took his diaper off, and told me he wanted to go to the bathroom, the lights were off, so he would not go in, so as soon as I turned them on, he went in and peed a bit on the floor, I quickly sat him again, and he finished in his toilet. The third time was after his nap, he went like a pro!!! I think the first day went awesome, at this pace, he will no longer use diapers very soon!!!!!!
Monday, April 30, 2012
G tube no More!!!!
So Jorge has an esophagram (barium swallow) done a months ago, and we finally got news from the doctors last week. We were told it looks so good, that if had been eating by mouth for more than three months we could take out the tube. When we did the math, it had been more than that, actually almost four months, so we finally took that step and got rid of the g tube!
He still does not eat with a huge appetite, he fights some times, or most of the time I must say, but regardless of this, he drinks four eight ounce bottles a day, and about 16 oz of water as well all by the mouth. We decided to do this, because we realized, that Jorge us just confused, and he thinks the proper way to eat is through the tube, and even though he has been doing it quite well by mouth, every day, he would ask to get his feeds via tube.
The doctor told us exactly how to do it, we gave him his last feed on Wednesday April 25th, at around 9 p.m.. We waited two hours so that the food would be already digested, and for him to be asleep. We grabbed a syringe, took all the fluid out of the tube and pull it out. Then we grabbed some gauze's, a lot I have to say, and covered the hole where the tube was, and went to bed. The next morning it seemed to have healed a bit, so when I sat Jorge on his high chair and started feeding, I realized the food was coming out through the little hole, it was just terrifying, so I decided to call his doctors in Boston almost having a panic attack, to hear this was completely normal, and that it would take at least 48 hours to get better. It has gotten better ever since, but we still have little leaks, so after he is done eating, we will lay him down flat on his back for about 10 minutes and voila!!! Leaks no more!
He still refuses to eat solids, so we are trying to figure out what our next step will be. We also got a bit of bad news. He will need surgery again for his craneosynostosis repair. The sutures did not close properly and we were told he has a gap between them in the skull. It sounds much worse that it is according to his doctor, I am not convinces yet that it is not so bad, but we have learned through the years that it is always better than what it looks like, so again we hope and trust God that he will have another wonderful doctor perform surgery on him, and that the outcome will be very very favorable!!!!!
He still does not eat with a huge appetite, he fights some times, or most of the time I must say, but regardless of this, he drinks four eight ounce bottles a day, and about 16 oz of water as well all by the mouth. We decided to do this, because we realized, that Jorge us just confused, and he thinks the proper way to eat is through the tube, and even though he has been doing it quite well by mouth, every day, he would ask to get his feeds via tube.
The doctor told us exactly how to do it, we gave him his last feed on Wednesday April 25th, at around 9 p.m.. We waited two hours so that the food would be already digested, and for him to be asleep. We grabbed a syringe, took all the fluid out of the tube and pull it out. Then we grabbed some gauze's, a lot I have to say, and covered the hole where the tube was, and went to bed. The next morning it seemed to have healed a bit, so when I sat Jorge on his high chair and started feeding, I realized the food was coming out through the little hole, it was just terrifying, so I decided to call his doctors in Boston almost having a panic attack, to hear this was completely normal, and that it would take at least 48 hours to get better. It has gotten better ever since, but we still have little leaks, so after he is done eating, we will lay him down flat on his back for about 10 minutes and voila!!! Leaks no more!
He still refuses to eat solids, so we are trying to figure out what our next step will be. We also got a bit of bad news. He will need surgery again for his craneosynostosis repair. The sutures did not close properly and we were told he has a gap between them in the skull. It sounds much worse that it is according to his doctor, I am not convinces yet that it is not so bad, but we have learned through the years that it is always better than what it looks like, so again we hope and trust God that he will have another wonderful doctor perform surgery on him, and that the outcome will be very very favorable!!!!!
Saturday, January 7, 2012
Happy 2012!!! let the good news begin!!!
So we had a wonderful and family filled christmas and new years! Jorge had a lot of fun, and so did we. We had both our families here, so Jorge got way to much attention, and of course got rotten spoiled. He is again the only baby in our families, so for now everything is allowed.
Right after New Years, most of the family left to go back home, and we yet again had a trip planned to Boston. We were not very excited to have to travel, and to have to deal with the freezing weather, but we had freezing weather here in Florida too, which helped a bit with the transition!!!!
Jorge had his number ?@?#?$ dilatation, we just lost count by now, and as we were expecting to hear that we needed to come back in a few weeks, the doctor gave us the most wonderful news ever. After 8 major surgeries and an unknown number of dilatations we are done! We finally got Jorge's esophagus to look like a tube, and not like a sand clock, and what this means is that we do not need to go to Boston for a while, and also that he will soon be able to eat solids, and whatever he wants, and that he will not have to go under anesthesia for a huge while.
I have laughed, cried, laughed and cried again. I feel like so much weight has been lifted from my shoulders, and most important I feel thrilled to be able to have a normal life, and allow Jorge to grow like all the other kids. Not fearing that he will catch a cold, so surgery does not get postponed, allowing him to play with other kids, and outdoors, to go in the pool, eat mud, all those little things that almost everyone takes for granted, but that for us just means a huge deal!!!!!
We continue to be amazed with his spirit. As we were waiting in the Hospital for him to get his procedure done, we realized that everyone knew him. When I say everyone that's exactly what I mean. The receptionist, lab techs, nurses, doctors, everyone just stopped to say hi to him, and he as always gave everyone of them a huge smile and his little hand wave that just melts my heart. He is just unstoppable, he will not let anything bring him down, and I trully hope he keeps this wonderful attitude through out his life, because if he does, nothing will stop him from achieving whatever he wants!
Now I have to focus on getting him to eat. Once we are able to do this, then the next step will be to get rid of the gtube. We do not know how long it will take, but we do hope the time comes soon enough, so what is left of all this experience is the lessons learned and the memories, all though tough sometimes, rewarding and important to help us become the family we are today!!!!!!
We got the best Christmas gift ever, and we hope you all did as well!!!!!!!!!
Right after New Years, most of the family left to go back home, and we yet again had a trip planned to Boston. We were not very excited to have to travel, and to have to deal with the freezing weather, but we had freezing weather here in Florida too, which helped a bit with the transition!!!!
Jorge had his number ?@?#?$ dilatation, we just lost count by now, and as we were expecting to hear that we needed to come back in a few weeks, the doctor gave us the most wonderful news ever. After 8 major surgeries and an unknown number of dilatations we are done! We finally got Jorge's esophagus to look like a tube, and not like a sand clock, and what this means is that we do not need to go to Boston for a while, and also that he will soon be able to eat solids, and whatever he wants, and that he will not have to go under anesthesia for a huge while.
I have laughed, cried, laughed and cried again. I feel like so much weight has been lifted from my shoulders, and most important I feel thrilled to be able to have a normal life, and allow Jorge to grow like all the other kids. Not fearing that he will catch a cold, so surgery does not get postponed, allowing him to play with other kids, and outdoors, to go in the pool, eat mud, all those little things that almost everyone takes for granted, but that for us just means a huge deal!!!!!
We continue to be amazed with his spirit. As we were waiting in the Hospital for him to get his procedure done, we realized that everyone knew him. When I say everyone that's exactly what I mean. The receptionist, lab techs, nurses, doctors, everyone just stopped to say hi to him, and he as always gave everyone of them a huge smile and his little hand wave that just melts my heart. He is just unstoppable, he will not let anything bring him down, and I trully hope he keeps this wonderful attitude through out his life, because if he does, nothing will stop him from achieving whatever he wants!
Now I have to focus on getting him to eat. Once we are able to do this, then the next step will be to get rid of the gtube. We do not know how long it will take, but we do hope the time comes soon enough, so what is left of all this experience is the lessons learned and the memories, all though tough sometimes, rewarding and important to help us become the family we are today!!!!!!
We got the best Christmas gift ever, and we hope you all did as well!!!!!!!!!
Monday, November 14, 2011
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!
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!
Wednesday, November 2, 2011
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!!!!
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!!!!
Subscribe to:
Posts (Atom)