2023 is almost gone!

 So we are here in the middle of chaos. The kids are full of after school activities and I feel like a mad driver going back and forth around the town taking them to all their things. Jorge is playing football! We tried so hard to convince him to play any other sport, but it did not matter, we ended up saying yes, and we just love to watch him play, in his Viking uniform on Tuesday nights. He is doing great with school, he is the coolest kid in town!

Alana is all about dance, dance friends, dance shoes, she could have a room at her studio if she was allowed. She has more sass than I can describe, and in my eyes hace the happiest feet in the world. She is a little social butterfly. Very loved by her friends and is just happy as can be. I have to say, she is out of three the one that is constantly resting my patience, and I can’t seem to keep up with it!

Then we have my rainbow baby! Amy big almost 3 year old crazy head! Oh how madly in love this entire family is with that child. We all can spend hours watching her be. She does not need to do much to have our attention, and we just love to be around her. Alana and Jorge adore her, and she just makes our souls smile. She has her own set of tricks. She loves to sing, and she can write and eat and kick with both left and right equally. She is very smart, I can say she was the easiest to potty train and train in any aspect except sleep. She can have full conversation with you, is so very articulate! She said momma before dadá’ so of course I am not biased. This child makes our hearts explode. She is the worst sleeper. Jorge is by far the best sleeping buddy in the world! 

Our lives are so hectic and crazy but this family of mine means the world to me! To say I am in love with my 3 kids is an understatement. Each one is so special in their own unique way! They light my days and they feed my soul! Oh what a happy momma I am!

Life after a pandmeic

 We have had a crazy year. In the middle of crazy times we realized our dream of having a third baby came true! We tried for this baby for years, and all we got was broken hearts! We had two miscarriages, and after treatments, surgery and so many upsetting negative pregnancy tests, we learned we were pregnant. We did not tell the kids until we knew the baby was ok, we had told the kids too soon before, and then had a hard time explaining the baby was no longer coming. We waited until Father’s Day to reveal the gender and we found out we. We’re having a little princess!!! Jorge and I were happy with a either a boy or a girl! Alana was dying for a sister, and little Jorge almost died when he realized he was outnumbered!!! We decided to name her Azul Elena! I met a little girl once with this name, and it just stuck! The pregnancy was hard on me, I had some breathing issues, and was tired, also I was caring for my mom who had been very sick! This baby was the joy this family needed to face the times ahead of us.We knew she would be early, all the kids have been premature, but this one decided to make her grand entrance 9 weeks early. On November 12, 2020 we welcomed our precious baby and she is just perfect. We spend the first 5 weeks in the NICU, not easy when you are in the middle of a pandemic, but with masks and everything we survived. This little one refused to eat, so I decided to stay for a full week night and day in the NICU and finally two days before Xmas after training her to eat we brought her home! She spent the Holidays with her siblings, her grand parents, and her uncles and aunt! We had a magical time. As time passed my mom figured out a way of bonding with her. Azul would nap and cuddle in the middle of my moms legs and my mom would hold to her foot. ALS took my moms ability to move, but we were able to have them both bond and share a love like no other. Mom passed away in March, but I will forever remember how much she loved this baby! 

This baby is a smarty pants. She can do tricks already. She can sing along the gum rain song! She can stick her tongue out when prompted to do so, she can wink her eyes of asked too. She is now six months and is able to turn, sit, hold her bottle of it’s half empty. She started eating baby food today, and it was not very tasty apparently.

Azul is strong minded. She knows what she wants, and at her short age we can see that she will be able to get her way. She is not one that is easy to convince and has the most beautiful eyes we have ever seen! We know she will be very successful in life! This kid makes my heart pound, she has us head over hills for her!

Jorge is also reaching an amazing milestone! He is going to middle school!! I cannot believe how much this child has grow. And we are so proud of him! He is so handsome and so sweet and such an amazing little boy! He loves sports, and we love to see him playing with other kids. I think he will be involved in the world of sports when he is older! He is just so passionate about it! I am just madly in love with him.

Alana is also quite something else! She got accepted into a program for gifted kids and she loves loves the challenges ....she dances like a superstar and has a very strong personality! I think she will be in showboat when she grows .... she has this adorable personality and she can drive me nuts... but I love this child to pieces!

I feel my family is now complete, I am blessed with these kids and with life

Fast forward 4 years!

So in the last 4 years our lives have turned around. We have had some great happy moments, and others a bit sad.

To begin we moved to Houston. After buying our dream home, and fixing it to our taste, we had to make the decision to sell it, the good news is, that we got to buy a new one, and we love it.

The kids are so grown up. Now a days they are independent. Jorge eats like champ. He got braces, and after trying out many sports like basket ball, taekwondo, baseball, tennis, swimming, he has decided soccer is his thing. He also takes piano lessons and loves art. I think when he grows up he will be either an architect or a graphic designer. He wants to be a soccer player, only time will tell.

As far as his health, he is growing. He is not the tallest kid in his class, but is not the shortest either. We finally passed the 50 lbs in his weight, he is a thin kid, but a really healthy one. He still needs dialations once a year, and will probably need some kind of surgery down the road, but I think he is doing great, and for that I am forever grateful.

Alana is also doing great. Last year she too got glasses, and she wears them like a superstar. She dances, and wow! She has sass. She can do whatever she puts her mind in to. I think this girl is going to be famous. She likes the adrenaline performing gives you, and she loves to shine. She is quite competitive and adorable and cute. For now she wants to perform for Simon in Americas got talent, and she wants to be a singer. We will see what life has in store for her.

As far as Jorge and me, we have had a few rough years. I was diagnosed with thyroid cancer, early stages and totally curable. We took care of that, only to learn that my mom has ALS, devastating news. We try not to let this diagnosis affect us, but it is a horrible disease. We also lost a baby this year, but Jorge and Alana are healthy and for that we are greatful.

We have also openned new business ventures. I have a shades business, and we now co-own a music school. We live crazy hectic lives. We have made amazing friends, and we just love to live. We try to make the best out of each situation and live as happy as we can.

That for now sums up the last 4 years 😉.

Time flies!!!

I almost have no time to blog ... I do like to write here, but so much has changed. Jorge started his big boy school. He is doing amazing. His teachers love him, and he loves them. He is now going to kindergarden.... he is so si so big. He is also eating like a champ.... almost everything he can.... he eats like a little pigglet. He knows his numbers and letters. He is a very expressive and friendly kid. He was not growing much so after months of screening he finally started taking growth hormones. We have seen changes ....it was very hard to poke him everyday, but he is the most amazing kid I know, and ay only five understands he needs this. We are very blessed and everytime we can we give thanks for our kids.

Alana just turned two. She is amazing too. She is already pottu trained. She sleeps in her big girl bed. She is never quiet. She will not stop talking... and has a personality that will allow her to go places we could not even imagine existed. She will be in showbusiness. She does not know the word shy. She will sung and dance and act infront of any audience .... entertaining is her thing. We think she is thr cuttest little girk ever, but yet again we are her parents so our opinion in biased.

They are growing so so fast ... but as they grow we just sit and realize that life cannot get any better. It does not matter how bad your day goes, just buy kissing these two ... greatness begins.

I love you!

So today I was reading an article on facebook where it said that one of the things we should do with our kids is writing letters. I blog every so often, but I have never told either one of my kids what they mean to me, and so in case something ever happened to us, I wanted each one of the them to know how they make me feel.

Jorge:
When we first knew we were going to be parents, we were so scared and excited at the same time. We had no idea of how we were going to do it, and we just could not wait to meet you, to hold you, and to love you. When we learned that you were special, we were once again afraid, but the minute you were born, all those fears just went away, and then we realized that all we needed was you. It does not matter if we have a good day or a bad day, if you are with us our days just brighten up. We know you do not have it easy, but we also know you are capable of achieving anything you set your mind to. You have the biggest heart out there, and have the strength and courage that not even your favorite superheroes dream of having. Everyday as we see you grow we thank God that you chose us to be your parents. You are a true blessing, and an example to follow. We love you so much little man!

Alana:
When we first learned we were expecting you we just could not believe how lucky we were. When we learned you were a girl our world just turned upside down, and when we first met you we realized that not even in our wildest dreams we could of have had a more perfect daughter. You are an amazing little girl, smart as can be, you know what you want and where you want to go, and you are just unstoppable. We know that whatever you want for life you will get, and we work everyday to make sure you know that. You are also the most adorable thing ever, every time you smile our hearts just melt, and when you hug us or kiss us, our world just stops. We thank God everyday for you and for your brother, and because you too chose us to be your parents. We cannot wait to see you grow. we love you dearly sweet angel!

Happy birthday Sweet Angel!

Alana turned 1, and we could not me any prouder of her than we are! She is an amazing, fun, loving and independent little girl! She adores her little brother, and she has just so much love to share! Her smiles just brings joy to our family!

We decided to do a family picture session instead of a party. She is too young to remember, and the pictures will last forever! We put her in the cutest outfit ever, and we all dressed in the same colors. The pictures came out adorable!

On the night of her birthday we invited some friends and family over, and sang happy birthday . . . . the kids played with their cousins and had a blast.

Jorge has been doing great. He has been eating like a champ, and is now learning to pay theUkelele. He is also in swimming and art classes. They are very active children, so I need to keep them extremely busy!

Alana is also in music classes, and is learning to swim. In her case they teach her to float and scream while she floats so she will be rescued!!!!!

On Alana's milestones she can climb on the slide, and slide all by herself. She can get down from the bed without assistance. She is finally sleeping all night and in her big girl room!!!

Last night we put Jorge to bed like we always do. First we pray, then we tell him a bedtime story, and then we give him an excuse ( I need to use the restroom, will be right back) so we can leave his room, and he falls asleep by himself. Yesterday we prayed, we told him the bedtime story, and then he kicked us out, he said go use the bathroom already! He is such a mature little boy . . . an amazing kid!!!!

We have two amazing children, and we are absolutely in love with them!

Welcome 2014!

A lot has happened in the last 2 months!!! Alana started walking . . . . she started at 9.5 months giving a few steps then falling, then we went on a mini vacation to Curacao, where she turned 10 months, and right there at the airport, she decided it was time to fly, and has been unstoppable ever since.

Jorge has been talking so much better, his eating is almost perfect, and we discovered he has astigmatism, so he got glasses. He is very excited about them. We also found out he has a droopy eye, so at some point he will get that fixed.

We celebrated Alana's first Christmas, and it was amazing, The kids has so much fun. Jorge asked Santa to bring him an entire store almost, but he is a kid that loves to play, so Santa brought him every single item on his list.

We went to Orlando for New Years. Both my kids danced the night away, they got on the Dj stand and performed for the entire party, it was amazing to see Jorge doing so well, and for Alana to follow him, they were just the cutest thing ever.

Now we are preparing ourselves for Alana's first birthday. Not quite sure what we will do, but her outfit is ready . . . . cannot wait for this day!!!!

Jorge turned 4!

This month we celebrated Jorge's 4th birthday! We had a small party at school, and then did a small get together at home! He had a blast at both! We did 2 costumes this year, Jorge wanted his birthday party theme to be Batman, so he had to dress like batman, and then we did Hulk for halloween. Alana was a very cute pink and white sheep, and for Jorge's birthday, we created our own version of a fairy, and named her costume Alanabell!!!!

For halloween we went trick or treating. The kids had sooo much fun, we also dis the Pumpkin patch deal, we took amazing pictures!!! The kids picked their own pumpkin, and then we carved it at home . . . Jorge is starting to want to do all these things, its just super cool!

Alana is now starting to give little steps, she will do 2 steps, and then fall, or throw herself to the floor, and crack up about the fall. She is finally allowing us to feed her. She never eats without giving a fight, but she gives in a lot faster than her brother . . . .they are both horrible eaters.

We also did Christmas decorations early this year! We are going to spend the month of November, and half of December in Bogota, so I decided to leave everything ready, so we would not have to worry about it when we returned home!

We took Alana and Jorge to get  haircuts, she loved it, she loves the whole pampering thing  . .. Jorge loves it as well!!! He likes the attention, and pops he gets at the end, and also buying caramel popcorn from the store next door!

The kids are just doing amazingly well! We cannot stop counting our blessings!!!

They are growing so fast!

So we are a month away from Jorge's 4th birthday! TIme has flown, and he is doing so so well! I am just amazed at how much he has gone through and how well he is doing! We are just so blessed. His speech is also improving a lot, he is finally making de c, and f sound at the beginning of a word. He still struggles a bit with some words, and it takes us a while to understand what he is trying to say, but that does not stop our little guy, if he can not speak it, then he will point it, or use his hands until we understand what he wants. That is just who he is, a fighter that will never give up!

Alana is also doing amazing. She is now 8 months, and is finally crawling like she should. She can stand on her own and cruise grabbing herself from things. she i snow asking for things, she can wave hello, and bye bye, also can clap, and knows where her hands are. She is making dada sounds as well as caca, still no mama!!!! She is a very alert and very smart little girl. She nows what she wants, and will let you know!!!

The cutest thing is to watch them both interact. They fight, and they hug an kiss. Jorge is a loving and caring big bro, and she is a little pain in his behind! LOL we are just so in love!!!!

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!

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!

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!!!!!!

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!!!!!

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!!!!!!!!!

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!