I got matthew wdw wish dates 4/15/2012

[threelittlebakers]

After 4 months of anticipation we finally got our date. Now i can start organizing and stratigizing the trip!

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[threelittlebakers]

Hello my name is Alicia!!! My son Matthew was born with multi birth defects. He was diagnosed with VACTREL syndrome. He has had reconstructive surgery of his esophagus, heart surgery, nissen, and a g-tube. He also has COPD caused by implications of esophagus deformed. Well he has been doing better but has had a lot of respatory infections. I decides a couple of months back that i thought Matthew deserved a wish to come true. He has gone through so much. In and out of ER, doctor visits, and lab work. I wasnt sure that he was going to get approved for a wish because of a lot of his diagnoses do not quite fit the catagories in order to qualify but his lung doctor had a talk with me about his lung condition and how it degenerative or pregressive. I was really worried because he wanted to go to disney world so bad i didnt want to break his little heart again. I got the call about three weeks later and got the approval. Then two weeks after the wish cordinators came out the my house and asked my son what his wish is. He was so excited. Then two month later we got the letter saying his wish was granted and that he will be going in April of 2012. I suggest Matthew to go in the spring time because in the fall and winter he gets sick all of the time and summer is to hot so the best time was spring time. The trip is a long ways away but i want him to enjoy the trip with out feeling ill or over heated. Im already creating an itenerary and shopping list so i am prepared. This is our first far away from home vacation. So if any parents have already gone and like to give and advice let me know i am all ears. Get it!!!

 

[threelittlebakers]

these past few weeks have been insane. matthew started pre-k two weeks ago. tell you it hasn't been easy because matthew has to go to school with a feeding pump. the nurse has no clue how to us it. i had to train her. she told my husband she gets frustrated with machine. matthew has had aspiration incidence. i got a letter from his teacher about it. i told them at parent teacher conference that its normal if he gets full. i just waiting for his gtube to fall out and they all are going to panic. im only frustrated because the lady whose ahead of the program said this program is geared for children like matthew

 

[threelittlebakers]

I don't know if i told you all. I tried to book a dinner at Cinderella's Royal Table. Unfortunately i did know that you had to pay for the dinner at the time you make the reservation. Of course i do not have no money at this time because my son and daughter birthday is coming around the corner. I contacted my wish coordinators to see if they could, but unfortunately that couldn't so i guess i will try to see if they have any when i call them in february. If not of well!!

 

[threelittlebakers]

I will start at the beginning before matthew was born. I had my first born, Emerald, on October 30. Then i got pregnant four months later with Matthew. Every was going fine with my pregnancy. I was a little more tired then usual still taking care of a baby and caring one as well and i hadn't truely recover from the first pregnancy. It wasn't until the last months that my OBGYN notice that I was caring too much amniotic fluid. I had alot of ultrasounds done. They notice that there was a defect in his umbilicord. I found out the last week of my pregnancy that i had polyhydramnios. No one truelly explain it to me until after they found something wrong with my son. Polyhdramnios is due to either maternal diabetes mellitus or of cases are associated with fetal anomalies that impair the ability of the fetus to swallow. Well my OBGYN made an appointment for me to be induced a day later because the fear that my water break at home. A lot of problem can occur during labor with polyhydramnios. Well guess what my placental abruptured the morning of at home. My husband rushed me to the hospital as soon as my mother came and got my daughter. Luckly when we got to the hospital nothing was wrong. My labor went well. Matthew was born November 5th. Then when Matthew was born thats when my mother in law who once was a RN notice that my son was foaming at the mouth, but the nurses thought oh that normal it should clear up in an hour or soo. I thought there was something wrong i asked the nurses again and they contacted the pcp doctor. The doctor did respond back till the next day. Matthew wasn't taking in any of his feeds at all that night. The next morning me and my husband told the nurses and they took him to the nursery to wash him and to check up on him. We hadn't heard from them in two hours. They came back and told us that his lungs sounded course and so they got doctors orders so they could take x-rays. Then this is when my world turned upside down. I remember when they told us that Matthew esophagus did not connect to his stomach and that they would have to have him transported to AI DuPont. I remember me and my husband crying in the middle of the hallways crying, like something you would see in a lifetime movie. We didn't know what to do. A few minutes later my mother in law showed up. Oh she was furious. I never seen that women so mad. She told them nurses that there was something wrong and no one listen. Well they shipped him up state to the childrens hospital. I had to pack everything up. Then we went up state to meet our son. By the time we got up there they had already had a diagnoses. (tracheoesophageal fistula/esophageal atresia) The doctors told us everything, but still had to run more test the next day. I was afraid, i so much on my mind, like will he be okay, what about emerald, where am i going to stay at, me and my husband were so unprepared. Well theirs know way you can actually prepare for something like this. The Ronald McDonald house was nice to put us up for a month and half free of charge because we had no saving money. i was going to go back to work in two weeks since i am already ajusted to taking care of new born but things worked out. The next day i found out that matthew also had asd/vsd. On the 7th went in and surgically repaired his esophagus and fistula. There were no problem thank god because there are so many scenarios that can happen with repairing the esophagus. Then two weeks later he had heart surgery. That went fine to but the recovery took a lot longer. Then they also told be that the repair to the esophagus could take up to a few months to a year to recover before he could eat. That to but a gtube in and a nissen so that he would not regurgitate and cause long term damage to the esophagus. Then we were finally sent home with meds and oxygen. Then another big horrible event happen in my life. A week later,the day after christmas, my mother passed away due to diabetes issues. I felt that i was lost. I lost my father when i was in high school from late stages of pneumonia. I didn't have to much support with my son because everyone else in the family had other things going to them. I had to take care of my son, daughter, and take care of my mother estate. Me and my husband moved into my mothers home. Mid winter matthew got RSV. In the hospital again and then in the fall for pneumonia which i was petrified because of my fathers death. The pulmonologist diagnosed him with COPD and chronic brochitis. He always gets respitory infection. Its common due to his birth defect. He has other minor health problem that are improving. The only thing keeping him back is the COPD and his ability to learn to eat. ER visits are common for us because his gtube falls out every month and they dont know why and that is very painful to put him through. He is a great little boy with a postive attitude. He had given strength i never thought i had in me. I has made me a stronger person and i will never be able to repay for that. I love you little man.

 

[Momto15]

We are working to pick our dates and will likely be there the same time as you!

 

[threelittlebakers]

We are working to pick our dates and will likely be there the same time as you!

That would be awesome. I like to meet some of the mothers on the discussion board. We are going April 15-21. I wondering what time my flight will be but it will probably be a while before i get the tickets. So excited and it so far away.