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!!!!!!
Wednesday, May 30, 2012
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!!!!!!!!!
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